Had my 1st DMSO and have ????

[mypookieluvsme]

I had my first DMSO instill yesterday, but I seem to be having a lot of burning during and a while after urinating? Is that a normal side effect of the catheter?
I normally do not have burning. I really seem to be hurting more after I had it done than before also.
TIA

[aprilmae]

The first few are rough. Take some AZO or uristat or something like that and it will help it to not be so bad. I had the same problem. Also, a warm bath can help too.

Hope you feel better.

[Bethrlk]

Hey TIA,

Your uro should give you a pyridium before the dmso treatment - ask for it next time BEFORE they cath you. I go through many DMSO cycles and am ALWAYS given a pyridium and an antibiotic shot before the procedure begins. The pyridium numbs the urethral area, so urinating after the dmso (and all the catheter changes) is tolerable!

Good luck - I hope the dmso works wonders for you!!

Beth

[mypookieluvsme]

Thanks to you both. I can't take pyridium, I found out I am allergic to it.
They didn't mention anything about an antibiotic, maybe I should ask next week.
I am almost afraid to try it again since I have been in more pain than before.

Thanks again,

Jennifer

[kadi]

The first few DMSO treatments are the worst, but they usually get better after that. When I had a series of 6 done a few years ago, I had a friend drive me & took Darvocet about an hour before the treatment & took an ice pack with me for the ride home. That helped some. Eventually when they got easier, I'd drive myself & take the Darvocet when I got home.

I usually planned the treatments for Friday afternoons, so I could rest Saturday & Sunday. I then felt fine to go to work on Mondays.

The DMSO treatments did reduce my symptoms quite a bit, but not enough, so eventually I went to home heparin instillations which worked out better.
Just telling you that because you may start feeling better soon! (And if you don't, after the series, the home heparin instillations may be a good Plan B)

Sending a hug & hoping you feel better soon--

[Bethrlk]

Yep, Kady - when I first started the dmso treatments years ago I always felt better after the 4th or 5th treatment. I tell all the newbies to give it some time - the first treatment is always the worst!!

As the years go by, I notice the dmso helping less than in the beginning - so rescue instillations are a must!

Have a great weekend, guys!

BETH

[Tammy321]

2nd DMSO

I just had my 2nd DMSO this week, the first was more painful than the second. I went in with pain both times came out w/ none. When i get home i dont feel the greatest. My head feels little funny, sick to my stomach from the smell, and i also am extremly tired, i sleep for the rest of the day. Has anyone had this too(tired)? Im ok for a couple of days and the the pain returns, helps with the urges and frequency, but not with the pain in my kidneys and my urinary tract coming out of my kidneys (pain and burning).I dont know if this is the treatment for me.

[Bethrlk]

Hi Tammy!

YES, the garlic smell is awful! My dmso dosage recently changed, and the garlic after effects last for an extra day. On the days I have the treatment, I would bring home pizza and Italian food for my family so I could "blend in" b/c of the strong odor!!

Since this is only your second treatment, I am assuming you are having one treatment done every week for 6-8 weeks?? Give it a few more treatments, unless your side effects are disabilitating. I have been on dmso for years and find that it really begins to help after the 4th treatment.....

For me, the treatments don't really make me overly tired - just the garlic smell and frequency immeditely following the instills.

Hope you feel better soon,
BETH

[mimimama]

Had my first treatment today. I am on day four of the worst flare ever. I also was officially diagnosed today. I am in alot of pain right now but it is SO reassuring to read all of your posts..especially you veteran ICers out there.

Thank you for your words of wisdom.

[Bethrlk]

Hi Mimi,

Good luck with the treatments.......some people, like me, are helped IMMENSELY by the dmso after a few treatments.

Being in a flare is the pits - I recently came out of a 4 month flare with help from a cycle of dmso and home instills...there is ALWAYS hope!!

Feel better soon!

Beth

[girl]

I had a horrible experience with DMSO; It always hurt worse after the treatment; a lot of it was urethral pain and like you, I am allergic to Pyridium and all of its deriviatives.
With that said, however, the last couple were definetely easier than the first few, and if it had helped at all, I would definetley do it again. It just didn't help, so wasn't worth the pain.
It does, however, help a great many people so if I were you I would certainly go through with at least the initial series of 6 or 8 to see if it will work for you.
It should get easier; here's hoping you find something that help you!!