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  1. #1
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    DMSO Side Effects

    Hello everyone, I was curious what side effects others have had with their DMSO instillations. I have had one a week for the past 5 weeks, and ever since I started I have had the worst joint pain. I ache all over, especially the days after the instillations. I have looked up information about this online, but all websites say that it is used to TREAT joint pain, not cause it. I even went to have my thyroid checked to see if that could be causing it, but everything turned out normal. Have any ideas?

    Thanks,
    Caitlin

  2. #2
    ICN Member Daisy Mae's Avatar
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    Caitlyn when I read your post I had to look again to make sure I hadn't posted it and forgotten. I have had one DMSO treatment a week for 5 weeks, too! Well, I take that back, I went for one Monday but they wouldn't do it because my culture came back with infection. Mild one, but they didn't want to do DMSO until I have a few days of antibiotics.
    As for the side effects of DMSO, yes ma'am! Me too!!! And not only that, I have blurry vision during the course of treatments, and my eyes burn like crazy. This is gonna sound so wierd but the taste and smell you get with DMSO, well, that's what I sense in my eyes. Strange, because I know eyes can't taste or smell but it's a wierd effect that is the same as the taste and smell you get with DMSO.
    I have a little burning in the vaginal area after DMSO so I have to clean the area really well with those little moist towelettes before I leave the office so that any of the chemicals that leak out won't burn my skin. It's like acid or something, maybe it's just my imagination but that's what it feels like to me.
    I get pretty nauseated (who wouldn't with the taste and smell of rancid garlic and chemicals?) so I take phenergan and sleep a lot. Also, there's quite a bit of bladder and urethral burning for a couple of days. I work Wednesday night through Friday or Saturday nights, and I get DMSO on Mondays, so I can have a couple of days off just to lay around. Part of that is from the bladder symptoms, part of it is from the sick feeling I get and yes, the joint pain.
    Are you having any relief from the DMSO? After a few weeks I usually am pretty glad I went through with it, but for the first few weeks it's mighty tough!
    Is this your first series or have you done it before?
    (formerly DonnaRenee1)


    Diagnoses: IC, fibromyalgia, inflammatory arthritis, connective tissue disease, reynaud's, APS, (the lupus anticoagulant, also known as "sticky blood syndrome")
    Meds: low molecular weight heparins, synthroid, methadone for pain, tizanidine, cymbalta, pyridium plus, urelle, phenergan for nausea, ambien, lisinopril, norvasc, plaqenuil for arthritis, and over the counter Prelief
    Treatments: DMSO, occasional hydrodistentions, hot baths, strategically placed heating pads and ice packs, TENS unit, and everything from pity parties to prayer.
    I have lots of support from my family. My husband and my parents are amazing! I have a wonderful daughter who also has IC, and she has given me 2 precious granddaughters. They are my heart and soul! Thank you God for my family!

  3. #3
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    Daisy Mae, I am glad there's someone else out there who has the same side effects! (Well, I'm not glad you experience this as well, but at least I'm not crazy!) It's also encouraging to know that the DMSO is most likely what's causing these symptoms. I was afraid there was something else going on that I didn't know about.

    Your side effects are basically verbatim what I experience. The cath itself stings like crazy (the worst part by far) but the DMSO burns really bad in the bladder. The 20 minutes I hold it are just horrible. I'm normally in tears by the end. The discomfort also lasts with me for a few days as well.

    I also get very nauseous! I've actually taken 4 pregnancy tests over the past 5 weeks because I've been so queasy.

    Ah, it's a big sigh of relief to hear somebody else has experienced this and I'm not the only one.

    Do you have a sulfa allergy? I do, and didn't realize that DMSO has sulfa in it. I wonder if that could be causing the bizarre side effects?

    As for benefits, it's been pretty hard to tell a large difference. It seems like as soon as the aches and discomfort fade from the previous installment, it's time for the next. I hope I'll notice more relief after today when I have my last one. This is my first time using DMSO, so I'm really hoping it's worth all of this. The only difference I've noticed is just that overall, I don't notice my bladder as much. This is good! But the frequency is still there. I can't expect miracles though, right?

  4. #4
    Forum Manager ICNDonna's Avatar
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    DMSO does have a component that sounds like sulfa, but it's not the sulfonomide in the antibiotic. I'm allergic to the antibiotic and DMSO did not cause a reaction for me. I haven't had any for several years, but I do remember tasting it --- didn't taste good! But, it did help my symptoms for an extended period.

    Donna
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  5. #5
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    My daughter experienced the same problems after her instills....nausea, fatigue, all-over "feeling lousy" for a few days but the payoff has been worth it. After her series of 6 instills, her flare-ups are less painful and overall her condition is improved. She had trouble sleeping for a few nights after the instills, as well, but the doc gave her Lunesta to help with that. She rarely needs it anymore.

  6. #6
    ICN Member Daisy Mae's Avatar
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    ncarrie you're on this forum because your daughter has IC? That is wonderful and a great way to show support. I'm very blessed in that my Mom is involved with it and has learned and listened to all she can about IC and she even takes me to all my dr's appts and dmso treatments when my husband's working.
    I'm very glad to hear your daughter's feeling better! My daughter has IC, but she cannot tolerate dmso so does other treatments. I do dmso, but it's tough, I have a lot of the same side effects as your daughter. I hope and pray she will continue to do well.
    (formerly DonnaRenee1)


    Diagnoses: IC, fibromyalgia, inflammatory arthritis, connective tissue disease, reynaud's, APS, (the lupus anticoagulant, also known as "sticky blood syndrome")
    Meds: low molecular weight heparins, synthroid, methadone for pain, tizanidine, cymbalta, pyridium plus, urelle, phenergan for nausea, ambien, lisinopril, norvasc, plaqenuil for arthritis, and over the counter Prelief
    Treatments: DMSO, occasional hydrodistentions, hot baths, strategically placed heating pads and ice packs, TENS unit, and everything from pity parties to prayer.
    I have lots of support from my family. My husband and my parents are amazing! I have a wonderful daughter who also has IC, and she has given me 2 precious granddaughters. They are my heart and soul! Thank you God for my family!

  7. #7
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    IC. DMSO side effects

    Quote Originally Posted by Daisy Mae View Post
    ncarrie you're on this forum because your daughter has IC? That is wonderful and a great way to show support. I'm very blessed in that my Mom is involved with it and has learned and listened to all she can about IC and she even takes me to all my dr's appts and dmso treatments when my husband's working.
    I'm very glad to hear your daughter's feeling better! My daughter has IC, but she cannot tolerate dmso so does other treatments. I do dmso, but it's tough, I have a lot of the same side effects as your daughter. I hope and pray she will continue to do well.

    My name is Debra, 56 yrs old. I was. Diagnosed with IC in August 2012. Dr. Flood told me it was the worse case she had ever seen. I have had these symptoms for over 20 years. I started my first round of DMSO Dec 19,2012. Was sick for 2 days. Now I had my 2nd treatment on the 28th, I have been so sick, blurred vision, major headache and hurt all over. It is not any better today. I hope and pray for everyone that has this, they do not get as sick as I am.

  8. #8
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    Anyone else get really itchy afterwards? I have been mildly itchy for about 2 years on and off, and it has gotten worse over the last 6 months, but since the DMSO treatments, I seem to be itchy almost all the time. My whole body is itchy but it's mostly in the private areas... They suspect urethritis at the moment because of the severe pain I get with a cathetar, but could that be causing my itchiness all over down there? It's been 20 years since I've had a bladder infection (I'm 28), and there is no possibility I have an STD. Just wondering if DMSO made it worse. I also suspect that sugar has something to do with my itchiness, but I've been a sugaraholic all my life; went off of sugar completely last summer when I was on HCG diet, then diagnosed with IC so I had to cut out the sweeteners and switch back to sugar. Now, the more I eat, the itchier I get... But when it got REALLY BAD was after my first DMSO treatment. I don't know. ??? Which theory should I pursue; DMSO or Sugar? I hope it's the DMSO.
    Summer of 2011: Severe Fatigue (sleeping 16 hour/day). Fall of 2011: Severe dizziness/nausea. December 2011: Ovarian Cyst Ruptured (left). January 2012: Severe Endometriosis/Uterine Fibroids Detected. February 2012: Uterine Cancer suspected, tested, benign! March 2012: Facial contortions began on Right side. CT Scan of brain done; nothing wrong. April 2012: Doc took me off of anxiety meds, thinking it was causing facial contortions. May 2012: Hysterectomy (still have ovaries) due to severe pain in left side, endometriosis, and uterine fibroids. Given Depo shot to prevent endo from growing. MRI done of brain b/c of contortions; nothing wrong. Summer 2012: Still pain in left side, esp w/sex. Went on HCG diet, lost 40lbs. Had EEG done on brain b/c of contortions; nothing wrong! Gave up. Developed extreme urgency & urinary retention problems. Given another Depo Shot, realized I was allergic! September 2012: Suspicion of IC. Started IC diet, put on Elmiron, gained weight and Hair Fell Out!! Contortions ceased. October 2012: Put on Elavil; didn't help, gained weight. Breast Lump Removed, biopsied, benign! Given alternative BC pills to suppress Endo. November 2012: IC confirmed with cystoscopy. December 2012: Bladder Distension/DMSO treatment #1 (full capacity was 350CCs; enlarged to 850CCs). December 2012-January 2013: DMSO treatments #2-#6. Extreme pain with cathetar during DMSO treatments; Urethritis suspected by nurse. February 2013:Told to take Claritin daily, AZO, Prelief, and Elavil for Flares. Urethra perfect. Pain is from IC. Scheduled for Once a month DMSO. Stopped BC pills. Hoping Endo doesn't come back any time soon!
    Weight Loss with IC Support Group: https://www.facebook.com/#!/groups/530204190358254/

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