• Fri, Mar 13 2009

Lupron Depot: My Side Effects

In my previous post, Lupron Depot: Worth the Side Effects?, I explained that I took three injections of Lupron for severe endometriosis a few years ago.

I had many of the common side effects, and some that your doctor may not mention. You may not experience these same effects. About.com has a good Lupron Depot page on side effects. And endometriosis.org gives you a great overview of how drugs like Lupron work.

hot-flashesMy Lupron Depot side effects:

Severe hot flashes – My face would turn red and I felt like my head and neck were in an oven. I got several of these a day, hence my photo choice! You won’t be drinking hot beverages while on this drug. Eek.

Night sweats – My sleep was disturbed by waking up all sweaty. Cotton PJs recommended.

Mood swings — As bad as the hot flashes were, the mood swings bothered me the most. I think they concerned me because they also affected my husband. I was just not myself.

Feeling violent – This side effect isn’t talked about much. Just let me say that I’m not a violent person. In fact, I was voted “most courteous” in my high school class. But when taking this drug I finally realized why teenage boys sometimes act the way they do. I had no (or very little) estrogen left, and that made me do things like kick a hole in a wall and hit someone. (Not that teenage boys hit people, but I did feel out of control.)

Hip pain — This usually occurred around the injection site and lasted for several months.

Palpitations — My heart talked to me a lot.

The reason I took the drug was because my doc thought I needed another surgery and he felt it would be best if I were on the drug during that time. As I mentioned, the typical course of treatment is six months, but I stopped after three. I couldn’t take the side effects anymore.

To lessen side effects, you can take advantage of add-back therapy that helps replace some of the hormones lost. I didn’t do the add-back because I was told it would make my treatment less effective. All of my endo symptoms returned quickly after the effects of the third shot wore off.

Another thing to note is that Lupron can cause bone thinning. You’ll have to take a lot of calcium while on the drug.

Obviously, I didn’t finish my recommended treatment, so I can’t tell you if the drug is effective. I can only say that, if it works, the side effects are a stiff price to pay for a treatment, not a cure.

Lupron isn’t all bad. It has been helpful to many people, but my feelings of doubt and wonder before I consented to the injections are what made me feel I had to share this. I want to present my honest experience.

Would I take Lupron again? No. Would it be good for you? That’s something only you and your doctor can decide together.

Please share your Lupron experience in comments.

(This info is for educational purposes only. It does not substitute for advice from a medical professional.)

Image via morgueFILE

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  • Torie

    I just received my first Lupron shot about 3 days ago and I’ve never experienced hip, back , and leg pain like this!!!!!!! I’m 20 years old and I feel like an 80 year old woman. My stomach has been feeling upset, and I’ve been feeling light headed and dizzy. I don’t know if maybe I’m just overreacting because I’ve heard all these TERRIBLE things about this drug or what. But I’m not sure if I can do this for 6 months..

  • http://www.blisstree.com/topic/pets/ Peggy Rowland

    Torie, hang in there! I’m not sure why you’re taking Lupron, but add-back therapy is available to ease some of the side effects. Also, talk to your pharmacist to make sure you’re taking enough calcium. You take extra when on Lupron, more than you might think.

    Good luck.

  • mary

    I had laparoscopic surgery in November which was to be followed by 6 months of Lupron hormone therapy. I am cutting my treatment plan short by one month finally! I wanted to stop it after my second injection thanks to side effects, but my doctor kept persuading me to continuing it. I am 24 and a full time student working close to 30 hours a week, so granted I am under a lot of stress. With that said, I feel that my personal stress load may have worsened my symptoms. During my treatment I was prescribed several medications to cope with the lupron side effects. I was given Paxil for anxiety because my heart palpitations were so intense that i couldn’t function(sleep, eat, socialize, have sex). I also had horrible mood swings to the point that my boyfriend/roommate deserves the biggest gold star of all! I was prescribed xanax, anti inflammatories, narcotic pain meds, ambien, had to get on a new birth control nicknamed the “mini”pill. My life has been upside-down, and as soon as the last little bit left in my system is gone, I hope to be able to return to my normal self. Being thrown into a premature temporary state of menapause has not been fun but hopefully I the endo will not return. I would never take lupron again. I know that some have found relief from it, and I can only cross my fingers and hope that in a few months I will find myself to be one of them

  • Charlene

    Hi,
    I am a very active dancer and actor and I’m 51 years old.
    I’ve been on Lupron for 6 months for extremely large fibroids and excessive bleeding. It took about 5 injections for it to take total effect and completely stop the bleeding. The hot flashes were severe in the beginning and I did experience occasional fatigue and some “brain fog” but that is over now and the hot flases have amounted to just several a day if any. I have had almost a 50% reduction in the size of my uterus (which was the size of a 14 week pregnancy) and the fibroids. Basically, this drug has given me a much better quality of life. I must add that I do exercise regularly and eat a mostly organic diet. I still indulge in chocolate brownies!!!

  • Jean

    If you want the truth story go to lupronexposed.com . there are thousands of women who have lost their way of life due to the side effects of this toxic drug. Get the MSDA sheet which OSHA has put out. Call Abbot Pharmaceutical company and request it. This is listed as a hazzards drug, as leuprolide, the brand name is lupron as you will see on the bottom of the sheet. I know of a friend who had 2 injections four years ago and has been unable to work and lost everything. she lives in pain. doctors do not know what to do to reverse this terrible condition.. It did wiped out her immune system.

  • Nada

    I took microdose of Lupron (20 units, twice a day) for 9 days as part of the treatment for infertility. Side effects are terrible. First day I was very weak, had a strong headache, memory loss and too friequent urination. After 2-3 day nightsweating started. Since I stoped taking lupron 3 days ago I have bleading – spotting and the worse of all – tingling on my face and head all day long. This is a horrible drug and should not be ever used. I do not know what to do. Please, please do not take this poison. Do not make the same mistake like I did.

  • Kristi

    I just got my first Lupron shot less than a week ago and that day I felt so dizzy and sick to my stomach. Now its not so bad, but my doctor automatically put me on the add back therapy. Do you know if its true that it makes the treatment less effective? I just can’t handle the pain so I decided that doing the Lupron would be a good option. So far I haven’t had too many problems since the first day… but then again its been less than a week. When did all of you start feeling the changes? Thanks!

    • Sharon

      Kristi
      I was curious if th Lupron/ add back treatment worked for you. I just did my first shot 3 days ago and have been sick. Im not sure its from the shot or if its part of the sinus infection. I had a partial hysterectomy and am trying to save the ovaries. I would love to know if it worked for you or any one that has done the full 6 months.

  • http://www.blisstree.com/topic/pets/ Peggy Rowland

    Kristi, every situation is different. My doc thought that add-back would make my treatment less effective, but I also had severe endo diagnosed when I was 28. Add-back may be OK for you.

    I believe my side effects started within a week.

  • Pingback: Endometriosis During Pregnancy : Blisstree - Family, Health, Home and Lifestyles

  • Janice

    I was on the Lupron Depo shot last year and what a mess. It was bad from day 1. I started feeling the side effects in a matter of days from excruciating painful cramps to hot flashes and flu like symptoms. After my third shot I couldnt get out of bed anymore, I went back to my Dr and told him of my side effects that he had not even been made aware of by the drug company.

    It is more than a year later since I have received any of these shots and I am still not right to this day. Please if anyone is going to consider this drug for treatment of your condition, please look into it further with your Dr. before making any mistakes like I did.

  • Katie

    I am a 27 year old nurse that has only seen lupron used for treatment of male prostate cancer prior to my diagnosis of endometrosis and I knew that it made those poor men crazy wheb they were on it so I was scared prior to treatment but my doctor laid everything out all the possibilities and side effects and gave me lots of reading material, and after ending up in the ER 2 times in such sever endometrosis pain I decided to go on the Lupron. I have been on lupron plus add-back since july I have had 2 injections and have not had a side effect one. I am taking 2000mg of calcium so suffer from constapation related to that. My endometrosis pain is nearly non-existant now I am glad for lupron, but very sorry that you all did not get the same benifits that I did. For people out there it is not always bad for everyone it is going to be different from person to person but it is always good to get all sides before making such a big decision!

  • Holly

    i was on lupron for 6 months and it has been the best 6 months of my life, ya there were side affects but they were nothing compared to the pain that i have been having for 13 years. never knew what it would feel like to be pain free but it is awesome i would do it a thousand times over.

  • Eliabeth S.

    I took Lupron shots about 2 years ago. My experience with all the side effects are just like everyone else’s. I had my last laproscopy after my last Lupron shot 2 years ago. Since then my period has gotten heavier every month, cramps more frequent and excrutiating each month, pain during sex which I never had before…and it feels like someone is ripping my cervix out. I have to lay there curled up in a ball, I sweat to death and feel like throwing up and passing out…all for about 30 minutes. I get this weird stabbing pain in my pelvic area that feels better when I push my stomach out. My appendix hurts every now and then. Pain shoots down into my thighs. I need to go back to have another Laproscopy obviously, but has anyone else taken any other medicines to decrease the pain of endometriosis? I just want to have kids one day and I will go through Lupron’s horrible side effects if I have too. Also, I’m now gettin these weird indentions on my upper thighs…does anyone have that…I read Lupron can cause disfigurment???

  • http://www.blisstree.com/topic/pets/ Peggy Rowland

    Eliabeth,
    If you’re still having that much pain after your lap, perhaps you should seek out a more skilled surgeon. The endo lesions need to be surgically removed, cut out. Not everyone is as skilled with this. Some surgeons will just diagnose and free up scar tissue, leaving the lesions. That happened to me for my first surgery.

    If you have another surgery, be sure to ask exactly what will be done. Also, I think you may be worrying a little much about the Lupron. Be sure to ask your doctor about side effects, and not believe some of the extreme things you read on the web. Disfigurement is a bit out there!

    Yes, I’ve successfully taken birth control pills (with low dose estrogen – Loestrin) for endo. Ask your doc if that’s an option for you.

  • Catelynn

    I had laprascopy in June to unblock my tubes and remove pelvic adhesions and treat infertility. Four months after, a hemorragic cyst had reached 7cm on my ovary and I had to go in for another lap. That is when they diagnosed my Stage IV Endo. One month after the lap, I was put on Lupron and have been on it for four weeks, so far. I had cramping during the first week, but since then no symptoms whatsoever. I am also using add-back therapy – and my RE made no indication that it would make the Lupron less effective.

    I was very nervous to even start Lupron, because I had done so much research and read all of the horror stories about the drug. I ultimately decided to take this path, because this is our last shot at conceiving naturally. The Lupron is only a treatment – not a cure, but it will give my body time to heal correctly without new Endo and tissue growth.

    While reading, I noticed most of these horror stories were experienced with the monthly injections, and I am currently on the 3-month injection. Maybe that is why there is such a drastic difference? Also, everyone is different and you never know how your body will react to anything. I just wanted to share my story and let women know that there are success stories along with the horror stories. Good luck to all…

  • Lindsey

    I was diagnosed with Endometriosis this August after having a ruptured cyst(endometrioma or chocolate cyst) on my left ovary. The doctor did a lap to remove the cyst and found stage 4 endo. He removed and all of the scar tissue that he could,scraped and also put in a sponge on my rear pelvic wall and over my left ovary to prevent more scar tissue from building up there. His treatment plan for me post op, was 6 months of Lupron, and urged me to check and make sure my insurance covered the 600 dollar a month shots.
    Honestly, I was terrified of going on Lupron after reading about all of the side effects and the horror stories that people have posted on the web (even some that have no relation to what Lupron does). The drug basically feeds too much agonist hormone to the pituitary gland, and causes the pituitary to physically exhaust itself, and then shut down, causing the temporary state of menopause, because it can’t tell the ovaries to produce any estrogen. The pituitary gland controls more than just hormone production causing more of the side effects of the drug. Wikipedia has great info on this.

    I am going for my 4th shot this month. I can say that it hasn’t been easy, but VERY effective at eliminating the symptoms of Endometriosis. The first two weeks I had a lot of endo symptoms, but had tons of energy, and a hard time sleeping, and some mild joint pain (nothing a little advil couldn’t fix). Then all of the sudden around day 12 I started feeling mild hot flashes, that increased in frequency and strength and length throughout the days for about 3 – 4 weeks. The two weeks after my second shot where the worst. I only slept a few hours a night (nightsweats and insomnia), intense hotflashes every hour for 1-2 minutes,a mild headache everyday, and brain fog and tiredness. I went in for my second shot and asked if the symptoms would get any better, and the nurse said flat out… honestly no they wont…just bear with it a little while longer because this really works for a lot of women with endo. I then invested in a good desk fan for work, and some layered clothing. I am a private person, but felt it was important to share what I was going through with my co-workers so they understood why I might be red in the face, or a little foggy at work. Plus, then they wouldn’t come to thier own conclusions about my odd behavior. I was just honest with them about what I was going through and they have been very supportive. My boyfriend is also very supportive, as I have ZERO sex drive and painful sex(this is wierd). I would also like to note that the better I eat during this treatment the better I feel. I have been drinking LOTS of water (you need it because you sweat a lot) limiting red meats, eliminatin gluten products, and eating only free range/organic fed chicken produce, and dairy products. I started eating poorly again around the holidays and I feel more moody and tired.

    Two weeks after the second shot (day 75) I finally started feeling better consistently. No periods, no endo pain, no more headaches. I can deal with a few months of hotflashes, heart palpitations, and mild moodswings for years of releif that my doctor says I will get from this treatment. I am supposed to follow up Lupron with birth control until I am ready to having children in the next 5 years or so. I’m not banking on absolute success, but keeping open mind, becoming educated about the disease and staying positive because I know that Lupron is not a “cure,” but certainly focusing on the negative and being high strung doesn’t help anything!
    Also, saving up for that “excision” surgery if I need it in the future.
    I wish the best to you ladies with Endo… It isn’t easy, and everyone is different, but so far I have had lots of success with Lupron!

    • Korinna

      Hello Lindsey,
      I just had a lap to remove a cyst from each ovary and am now on Lupron. I took the 1 month shot and had night sweats. Then I took the 3 month shot, but I asked the doctor for adback therapy for the night sweats. However just this past week I’ve been feeling palpitations and poor coordination and after reading your post about “Palpitations” I wanted to know how long this lasted for you? I went to the general doctors not knowing what was wrong, but my mother, who is currently menopausal, said those are symptoms she has. Which led me to believe it’s the Lupron!!! My doctor’s nurse said it could be. What was your experience and was there anything that helped?

  • Mar

    I’m 32 years old and was diagnosed with endo just before Halloween ’09 after 5 years of misdiagnosis of interstitial cystitis of the bladder. It took having so much blood in my urine that it was brown for a doctor to re-evaluate my situation and diagnosis. My husband and I have been trying to conceive since Jan of ’09 and went to my gyno in July ’09 for pain meds to take during my period; I was told there was nothing to give me w/out serious side effects to an unknown pregnancy (haha, obviously if I had my period I wasn’t pregnant!!). I got the impression the doctor believed I was just trying to get a referral to an infertility specialist although I had no idea what was to come. I did have a gut feeling after 8-9 months of not conceiving that there was something wrong with me. I left her office very dissatisfied and felt as if I wasn’t being taken seriously. Since stopping birth control approx 18 months ago it took 6 months after no pills to feel debilitating pain. I took the maximum allowed daily dosage of Advil during the week of my period and at least another week after due to additional “bladder” spasm pain. The period before the Lupron I was up to 2400 mg of Advil a day to take the edge off my pain to go to work and function per doctors orders. I digress…

    I had multiple tests and surgical consultations and all the doctors wanted to do surgery, but couldn’t guarantee my reproductive organs being intact due to multiple endo cysts. My husband and I went to the last consult and the urogynocologist absolutely agreed with us and no surgery…Lupron was her recommendation to treat/control my endo. We asked what to expect and she said w/my add back therapy of 5mg of progesterone daily I shouldn’t experience too much. HA!!!!!

    I was given a 3 month dosage injection on 12/01/09 and side effects began in the first 24 hours. They include, but are not limited to: moderate to severe anxiety, anger (mood swings are insane and unfair to my poor husband), and depression (don’t feel suicidal, but would prefer to sleep away 6 months of Lupron) occurs weekly for a day; hot flashes, maintaining a noticibly higher body temperature; moderate/severe acne (never had more than an occasional zit in puberty); insatiable hunger; weight gain (approx 8-10 lbs to date); fatigue; insomnia; night sweats; extreme/debilitating bone/joint and muscle pain primarily in shoulders and wrists, neck/shoulder/bicep/forearm muscles (so bad that I can’t dress or undress myself if my clothing requires going over my head, which is most clothing); no libido and dryness; forgetfulness; and more frequent than usual urination.

    Lupron has been extremely effective in stopping all endo pain along with my period of course…I had completely forgotten what it was like to be pain free for more than 2 weeks at a time. I don’t know yet how much it has helped to shrink my endo tissue/cysts to enable me to hopefully conceive after the end of treatment.

    After all the side effects began my husband and I began to research Lupron and that has me even more scared than some other alternatives. Since I seem to be so sensitive to this drug and have such strong and many side effects we are considering ending treatment and getting no further injections. I could deal with all but two side effects: anger/depression (go hand in hand) and bone/joint w/muscle pain. Everything else is manageable. Luckily my husband is a chiropractor and his adjustments along with therapeutic massage give me 4 out of 7 days a week relief from the joint/muscle pain. I refuse to take any additional meds to help with symptoms/pain. I have only added calcium along with vitamins B 6 & 12 to my prenatal multivitamin.

    It’s all so overwhelming and confusing and hopefully we’ll come to a decision after more doctors appointments.

  • Lizzy

    Has anyone found anything that is helpful for the joint and muscle aches? I’m in my second month of a 6 month cycle, and the aches are horrible. I upped my dose of fish oil to 3 grams a day. I cant tolerate motrin because of taking to much for the endo prior to the lupron and it burned my stomach lining. I read about upping fruits and veggies and fiber. I will try that. Any other suggestions? Thanks to all the comments. Very helpful.

    • Sharon

      I just did my second injection and knock on wood it hasnt been to bad. Try also increasing your magnesium and potassium intake.
      I just cant get rid of the low grade headache.

  • Crystal

    I’m on my 3rd shot, I have 3 more shots to go.. The first shot I didn’t have any hot flashes but I had headaches real bad… My second shot the hot flashes came and I couldn’t sleep at all, dizziness, emotional, and weight loss. My third shot…The hot flashes are not that bad I get more cold then hot now umm… but I still can’t sleep for nothing. My doctor says after the shots hes going to but me on fertility pills so I’m hopin this is going to be worth it I can’t wait to have a baby. Has anyone else on here concived after lupron?

  • Ctinaj

    I am 33. Lupron treatment for endometriosis: 6 months long, 3 monthly shots, 1 – 3 month shot. Side effects: hot flashes (easiest of them all), fatigue, but the worst was the moodiness. Extreme moodiness. I had days all I wanted to do was scream at the ones trying to help me through this. It was awful. And the add back therapy made it worse. The doctor insisted I take it, but I seriously could not. My last shot was 4 months ago, and I am afraid of what the lasting side effects are. My moods still swing, pretty severe, and still having hot then cold, hot then cold times. I will not do it again. My pain was in my hips from the condition. It was so bad, I couldn’t function. I must say the last two months, I have had minimal pain, which was the point. Although, I now have extreme muscle weakness in my hips. I kickbox three days a week, so I am positive the muscle weakness is a side effect of Lupron. My family has been strong and suffered through this, but I know some of the moods have had a lasting effect on them.

    • Ctinaj

      Additional side effect: NO libido after the second treatment (also when I quit the add back therapy). Seems to be returning now.

  • Peter Mills

    I began my Lupron injections almost 3 years ago, in December 2007, first they were of the 3-month variety, but more recently, they have become the 4-month variety. i have my last injection next week.
    My age is almost 75, a male, my diagnosis was described to me as ‘small, but very nasty’ following my TURPS operation, and subsequent biopsy of the tissue removed. Hence the Lupron treatments.
    Like everyone else I have suffered a complete loss if libido, not even a twinge!
    My mind says yes, but there is no physical reciprocation!
    My PSA results have been excellent for the past 12-16 months – “less than 0.04″.
    I’ve suffered the hot flashes – sometimes quite violent, usually near the end of the injection period; weight gain; tiredness; stiffness of the hips, leg cramps; etc.
    And of course the loss of libido. Will it return, or have I been “saved” for . . . ?
    I should mention that I also had a course of Radiation Therapy for 7 weeks, which ended about 18 months ago.
    Presently I am having to live with slightly elevated BP – don’t know if it is related in any way.

  • sherry

    I found out I had enlarged fibroids a few months ago and I was severely anemic because of heavy bleeding. My blood count was so low that I was given a blood transfusion. Additionally, because the fibriod was so large, it was resting on a vein on my left leg, which caused poor blood circulation and as a result, deep vein thrombosis (swollen leg caused by clotting). I am currently using medication to thin the blood (warfarain).

    I was given my first shot of lucrin a month ago, due to take the other in January. My doctor recommended this treatment because surgery had to be delayed due to the clotting that had developed and also because some clots had already travelled to my lungs (shown in CT scan), and also because he did not want me losing any blood for the three months that I had to be on medication to prevent further blood clotting and also to melt what was already there.

    Although my period was delayed for a couple weeks, it still came weeks after taking the first lucrin shot and the pain was excruciating. I felt as though I was having contractions (labour pain). Although my period did not come as heavy as it usually did in the past, I am now on my seventh day and hoping for it to stop soon, otherwise I may need another blood transfusion when I do my surgery, hopefully in two months.

    My doctor did indicate that the worse case senario was that my period would still come after the first shot, but I am hoping that it does not occur again, especially since the injections are sooo expensive.

    Has this occured to anyone else? Having a period after first shot and with such severe pain? Please reply…

  • Peter Mills

    Further to my earlier comments regarding Lupron, it is almost six months since my final injection ceased tobe operative.
    I am still having hot flashes, but not so often, and they do not last as long as previously. However, they are quite ‘violent’ at times.
    It is quite nice not to be disturbed during my sleep so often! As for my libido – least said . . .

  • Peter Mills

    Am I the only guy who was/is on Lupron?
    I feel so lonely!!!!!!!

  • Mackenzie

    has anyone experienced stomach aches while on the lupron injections? I’ve gotten stomach aches, not cramps, but like punched in the stomach feeling stomach aches every day since I had the injection. I’m almost 1 month into the injection, and it’s a 3 month injection. My dr. tells me it’s all in my head, lets just say, I’m losing faith in her and will be looking for a new obgyn soon. I don’t think it’s a coincidence. It doesn’t help that my doc didn’t clue me in at all on any side effects.

  • Pamela

    I have had 1 injection and I have been having leg craps. Mood swings and anger issues is this all normal? I’m a easy going person but not now.

  • Chris

    I took one shot of 3.75 Lupron depot nearly 30 days ago. I WILL NOT TAKE ANOTHER. The side effects were worse than the symptoms of endo I was experiencing. I had immediatly severe mood swings, and currently am suffering from extreme depression and high anxiety. This drug is TOXIC.

  • Barbara

    Did you take ad back therapy with your lupron depot? I was going to take the Lupron but now am terrified after reading all these horror stories. Don’t know what to do now. My doctor said the add back would lessen the side effects. I noticed most of the people who are posting are not mentioning weather or not they took ad back therapy. I am totally confused.

  • http://www.blisstree.com/topic/pets/ Peggy Rowland

    Barbara, I know I’m not Holly, but to answer your question in general, no – I didn’t take add back. That should help with the side effects. My doc said it would be more effective if I didn’t take the add back. However, this is just a treatment anyway, not a cure, so maybe that part doesn’t matter so much. If I ever HAD to take it again (don’t see that happening), I’d try the add back. It’s pretty tough without it.

  • http://www.blisstree.com/topic/pets/ Peggy Rowland

    Wow $600 a shot? It was only $450 when I got it back in 03. I’ve never understood the high cost of this drug.

    Hope it goes well Lindsey.

  • Lori

    Hi Katie. I have been taking Lupron for the past year as part of a breast cancer treatment plan. I also take calcium and iron supplements, which cause constipation.

    I have found a high fiber diet very helpful in releiving the related symptoms. It was hard to make the dietary changes at first. I tried adding more fruits and vegetables, but it was more food than I could eat comfortably. Eventually I found a very tasty, high fiber yogurt (Yoplait / Fiber One) that is only 50 calories. Much better than the fiber bars and much easier on your system. I hope that helps.

  • Sandye

    Hi Mary,
    After reading your bio on Endometriosis/Lupron + therapies on Blisstree I felt an urgency to inquire on you. After all the hardship you went through
    did the Endo. return?

    I am about to begin my 6 month treatment and was hoping to hear more positive stories
    on this site. It’s a harsh mediation and it’s making me a little nervous.

    I hope you found relief…

    Best,

    Sandye