Will Imuran be enough? Cystitis?

[hoping]

Hi all,

Hard to get on computer much, pain is so bad.  Still bad burning all the time in entire upper body down to thighs, especially arms and rearend.  Now feel like I may be getting interstitial cystitis, awful burning pain in the crotch area- worse during period.  This is apparently something SjS can also cause.  Here is a link on it: http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/

Now have reflux, very slow inactive bowels, neuro PN and CNS, possible inter. cystitis, and the awful jt. and musc. pain, mega fatigue, plus the lovely dry mouth.  Cannot get around much without walker because knees hurt so bad and stamina is so low.  Been on walker since JAN flare which continues marching on in my opinion.  Burning has only worsened, now very bad in hands and feet.  My symptoms seem worse b4 and during my period?  This the case for others? 

Am on all the typical meds for nerve pain.  Plaquinel takes how freakin' long to kick in?  It's only been less than 1 mo. and I'm already growing very impatient.  Started me on Imuran a week or so ago.  Is this drug alone going to be enough to knock down my immune system???  How long do you give it for a fair trial?  I guess I'm just all negative these days.  I'm hoping he will be more aggressive if need be.  Otherwise, I will need to schedule with Birnbaum.  And that is really WAY out of the budget.  I've been trying biofeedback with minimal success.  No one wants to give me anything to help with the pain or help me sleep.  My pain doc. says I'm on too many meds and that can be causing more trouble.  I'm tired of sleeping with icepacks on to numb the pain and waking up once they've thawed out.  Also new area of numbness around lip area on one side, trigeminal nerve according to dentist.

See the neuro this week, at a loss as to where to start.  Glad I have a diagnosis finally, but really hoping I can get the appropriate treatment now to feel better.  EMG in Jan was norm. probably still is even though numbness is way worse in hands and feet.  MRIs in Jan. were also norm.  Last lesion was seen in 2006 and resolved.  Sorry to spill out all these frustrations, but I'm having trouble doing anything anymore.  Spring is here and I'm still a prisoner in my house. 

One good note, eyes were so dry and Restasis just burned and really didn't seem to help.  Had had lower plugs in and that did nothing.  Went last week, he put in upper plugs.  I now have TEARS, in fact tears pool in my rt. eye and sometimes trickle down my face.  But I'd better not mess with it, guess he could remove it, but I'd rather deal with wet eyes anyday compared to dry!  At least, I can go outside in the wind and sun and not suffer so.  Added benefit, not shelling out anymore for Restasis and OTC gel drops and ointments.

Good day to all of you.  Thanks for hearing me rant,
Karin

[irish]

Karin, I really am sorry that you are in such misery. Seems like you have more ailments than any person needs. I will start with the eyes. When you started the Restasis did the eye doc have you do a week or so of prednisone drops first. This helps decrease the inflammation in the eyes so that the Restasis doesn't burn as much.

The reason that the Restasis burns is that the our eyes are so dry and inflammed. After using them for several months the burning decreases in most people. I don't have problems with burning anymore except in really dry weather and if I forget to put my drops in. It does not pay to forget to put the Restasis drops as the inflammation sneaks in fairly fast. Also, people say that if you have really severe burning it helps to put the regular eye drops in about 15 minutes prior to the Restasis and about 15 minutes after the Restasis.

I have forgotten, is there any reason that you are not on Prednisone??? Usually people have prednisone and Plaquenil at the same time as it gives the plaquenil time to kick in. Everyone is different on the amount of time needed for the med to kick in. The imuran is a good drug and hopefully will help. With these drugs it sometimes takes time till you find the right one. Many people on this site are using Cellcept with good luck.

Also, you might want to mention IVIG (intravenous gammaglobulin) therapy for a couple sessions. Sometimes this can be just enough to zap the autoimmune disease and decrease some of the really bad neuropathy. This is an expensive treatment but one may be able to get it paid through their insurance if the doc writes special letter. Also, other modes of payment may be known by insurance departments of these infusion centers. Good luck with this. Wish I could wave a magic wand and make you better. Don't give up---hang in there and keep coming back to let us know how things are going.

Also, have you happened to go to a pain clinic to get pain meds assessed??? Frequently better pain control is obtained with this input. Irish

[Chickpea]

Karin - it sounds as though you're having a really tough time right now.  I totally sympathise with you when you describe the toxic combination of pain and difficulty walking, and then all sorts of odd things added in to spice up the mix.

Irish's advice is spot on, as always.  I've been on Plaquenil and (decreasing levels of) Prednisolone for 8 months, and CellCept for nearly as long.  I think it's probably the Prednisolone that has made the greatest difference, particularly with cns symptoms especially tremors and headaches.  From what Irish says, and from reading posts here, I don't think it's unusual to try different types of  immunosuppressant and I'm about to start a different type.  However ... you need to give everything at least 6 months before you can know whether they're likely to help or not.

Does your pain doc not have anything to offer you?  Telling you you're on 'way too many meds' isn't the most helpful comment he could make in the circumstances!  Have you tried a TENS machine?  I find it helps a little with leg pain.

I'm sure you've read up on Dr Birnbaum's ideas about SjS with cns involvement but it might help to read it again before going to see your neuro.  Hope the visit with him is useful.  Let us know how it goes.

Thinking of you - Chickpea

[hoping]

The rheumy asked how I felt on 40 or 60mg of Prednisone.  I told him I felt much better, but all the doc's have been fussing for me to get off of it (this was b4 SjS diagnosis).  However, I am borderline diabetic, and osteoporosis does run in my family, and since I've been on Prednisone for ten or so years (mostly low dose of 5mg, but higher when bad), the hope was to get off of it.  In Jan. I had high dose IV Prednisone for 5 days or so.  Then tapering off, got to 15mg or so and was having more and more pain.  Made it down to 10mg and he said to leave it there.  Have been checking blood sugar and it is steady in the 80s.  Last bone scan was completely normal.

Have had IVIG in past, it works well, but I got asceptic meningits reaction to it first time.  The second time, developed severe migraine that required IV drugs for.  I am only willing to try it if I only get it one or two days.  Three or more days in a row seems to get toxic for me with headache building to intolerable levels.  I have to have it infused over a long period of time and get IV Prednisone with it and Benadryl.  I doubt anyone is willing to try it with me, but something to keep in mind.  Might be worth mentioning to neurologist as something worth trying to help with neuropathy.

I was on Restasis for nearly a year.  Burning never did improve with time.  Less burning when eyes were premoistened with OTC drops.  However, was using OTC drops sometimes every half hour.  Never had Prednisone drops. Lasicerts were my other option, but thought I'd try the plugs first.  But now I have constant tearing in the rt. eye and it blurs vision for reading, etc.  Not sure if I should address it because it beats the dryness, but constantly wiping tears away is an annoyance.  What do you all think? 

I do get my implanted Baclofen pump (used to control my severe spasticity) filled every couple months by a pain doc (anesthesiologist) at a pain clinic.  But like I said he has nothing to offer, so I'm at the point of looking for another clinic to address my pain management.  I'm weary of doctor's visits and I'm sure hubby is sick of driving me, so I try to stick it out.  TENS just seems to annoy the pain.  Heat and ice work but only while they're on.  I'm too young for all this (42) and has been going on since I was 31.

Thanks Irish and Chickpea for your responses.  Really appreciate it.
Karin

[cat]

You should ask your Dr to send you to a Urologist and get checked for Interstitial Cystits. I've had it for longer than I can remember but I do remember early on my symptoms were always worse before my period. Then gradually as the years pasted the symptoms started further and further before my period until eventually they just never went away. i was diagnose with IC before SJS. Just having one is horrible enough but having both is unbelievable. But there is more help available today than when I was diagnosed. I'd like to hear how you make out.

Cat

[hoping]

Have an appointment with urologist set up.  Will keep you posted on what he thinks.  Did you undergo any specific tests or were you diagnosed based on the symptoms you described?

Karin