My meds and "strange happenings" link or no link?

[*Niki*]

Don't quite know where to start with this so i'll just babble on.

Apart from my P i've been "as fit as a lop" but lately i've been thinking about all the various "things" that have been happening (and it could be coincidence) to my bod since having various immunosuppressant drugs.

First one was after taking Tacrolimus-i acquired kidney "impairment" never been told exactly what that means, although i have asked!  I'm assuming all is well as my kidney doc (the pompous ass) never says anything to the contrary but i'm left with blood in my urine (not visible to the eye), which was not there before!

Since taking MTX (for 2 years) then having Raptiva, Enbrel and Infliximab (all within 6 months) the last 2 smears i've had have come back borderline, i'm now waiting to have a colposcopy    can't wait for that one-NOT!!

I've had recurrent infections in my mouth resulting in the loss of 3 teeth (2 in the last 6 months). My dentist is baffled as i see him every 6 months (though lately i never seem to be away) and look after my teeth-he's convinced it's the medication.
My derm knows about all but the last tooth but is quite nonchalant about it, which is starting to p*ss me right off.
I know i can't PROVE that the meds are to blame (or can i?) but surely they must be playing some part, either that or it's my age!!  

I'd love some comments regarding this (and not to get myself a large glass and some steradent tablets   - mindst ya, the way it's going ..........  oops wrong smilie   that be more me-no teef!!!)

At the moment i'm on 50mg Enbrel twice weekly and it's not doing the job-i dote want to have MTX again as it caused massive hair loss after the infliximab (up until then i'd had no side effects at all).

Any ideas on what i can have next?  
I need as much info/ammo as poss to throw at him when i go in May as i was told at my last visit i was closing down all his options.

[animalhouse]

i think ya have run them all ?? not overly sure but hope reading through threads ya might find some info that will help.
sorry im no more help than that

[SJ]

I can confirm something for you.

Immuno-surpressing drugs can affect smear test results.

MTX, for example, not only affects the immune system (and therefore a virus such as HPV can rear its head) but it also changes the structure of certain cells, including, I understand, those on the cervix.

I know this because 5 years of MTX gave me a borderline smear, which needed further investigation with a colposcopy and biopsy.

The doc said that it was the MTX and why derms don't warn women taking MTX to either be aware of this or expect a borderline result was beyond her.....

So at least you know that is probably connected!

At least you are one of us women who has the good sense to have regular smears. I am sure you will be absolutely fine....really. I was. No ill effects, no treatment....just yearly smears for 5 years after to keep a close eye. Nothing more happened and I have never had a borderline since (but then I haven't taken MTX again either  ).

SJ

[david_8]

hi, ya

when they stopped my 35mg dose's of mtx/tabs  after  3yrs , i felt much better but the rheumy/derm said that the drugs and oints where not the cause of my probs &no link , this was before you had to sign disclaimers said my liver needed a rest, and bloods show somethinks  amiss ever since and cant /couldent have a infushion  etc ?

i was  goining to go  after 1 consultant  thought the courts but notes/files went amiss
and the consultant  had his legal adviser warning me of

my  last derm diagnosed me as a none responder ?

 under new nhs rules you can ask for your copies of  tests results and any diagnoses  in writting before you leave the consulting room, its to stop all this well the consultant said ? but the letter to the gp said ?
 "  i am goining to try it this friday at my imunnologist apt "

?  if there was no link with mtx etc,  did they/you have  full  serum/ana /dna/biochemistry etc etc blood tests to rule out any other auto/imunne/diseases

?  did you  try/have combination ie mtx&enbrel  etc


i read some where mtx works better 2nd time round but it didn't explain why or whether it meant injection as well,  they just noticed patients got better results

 i am reading about mtx gel and combination creams under occlusion  at the mo
 its not a new treatment,  meant to have less side effects like the injections

pehaps a change of consultants ie diff/look at  treatments etc

 hope  the enbrel kicks in and all goes well

[*Niki*]

I can confirm something for you.

Immuno-surpressing drugs can affect smear test results.

MTX, for example, not only affects the immune system (and therefore a virus such as HPV can rear its head) but it also changes the structure of certain cells, including, I understand, those on the cervix.

I know this because 5 years of MTX gave me a borderline smear, which needed further investigation with a colposcopy and biopsy.

The doc said that it was the MTX and why derms don't warn women taking MTX to either be aware of this or expect a borderline result was beyond her.....

So at least you know that is probably connected!

At least you are one of us women who has the good sense to have regular smears. I am sure you will be absolutely fine....really. I was. No ill effects, no treatment....just yearly smears for 5 years after to keep a close eye. Nothing more happened and I have never had a borderline since (but then I haven't taken MTX again either  ).

SJ

Many thanks for that SJ, i will tackle my derm with that info when i next see him (i did wonder why he was so concerned with whom i was seeing and when).  I will use this to argue my point re: MTX as i'm not about to go thru losing my hair again and i'm sick to death of that flaming speculum-we're on first name terms

[*Niki*]

hi, ya


?  if there was no link with mtx etc,  did they/you have  full  serum/ana /dna/biochemistry etc etc blood tests to rule out any other auto/imunne/diseases

?  did you  try/have combination ie mtx&enbrel  etc


i read some where mtx works better 2nd time round but it didn't explain why or whether it meant injection as well,  they just noticed patients got better results

 i am reading about mtx gel and combination creams under occlusion  at the mo
 its not a new treatment,  meant to have less side effects like the injections

pehaps a change of consultants ie diff/look at  treatments etc

 hope  the enbrel kicks in and all goes well

Hi David,
Firstly i have no idea if any of those tests have been done, but nothing has been hi-lighted to me regarding any illness.

Regarding Enbrel/MTX - Yes i've had that cocktail and MTX/Infliximab
My body does not seem to tolerate high doses of any drug (got to 17.5mg MTX for 1 month, then it was lowered) but my P does not respond to low rate doses-Catch 22!

It was the second round of MTX when i started with the side-effects; nausea, headache and the hair loss, which was after my 3 Inflximab infusions. I was on MTX/Enbrel and i was convinced it was the Enbrel causing these as i'd previously had no side effects at all with the MTX (and i had the occassional drink)

We stopped the Enbrel for 2 weeks (to placate me) but the side effects carried on, it was then that my derm said that for some reason since i'd had the Infliximab my body was absorbing the MTX at a greater rate causing these effects and that's when it was stopped.
I then had the Enbrel (25mg x2 wkly), this hasn't kept it at bay so he increased it to 50mg, approx 12 wks ago and my P is getting progressively worse.  More so since i've had my tooth out (might be the shock to my system-who knows)

I'll have to discuss "options" when i see him in May as i don't hold out much hope for the Enbrel to kick in. The best results i have had were with Tacrolimus, gradually increased from 6mg to 20mg but when this still resulted in hospital admissions (and apparantly 20mg is a high dose) and then kidney "impairement" was discovered and it was stopped and is now no longer an option, neither is cyclosporin (which i don't tolerate at all-hence Tacrolimus).

I don't know what to do about changing consultants-there is no one better at my hospital than the one i see and what will another one do? what is there left to offer me?
That's my burning question.   Any ideas?  Anyone?

[brizee]

i would say there probably is a link, there cant be many folks who have used all those meds in a short space of time, or been lucky enough to try them, the problem is gonna be finding a specialist with experience of others in the same boat bearing in mind some drugs are relatively modern.personally id keep gettin tested and ease off the meds for a while.
hope all goes well.

[*Niki*]

Hi Brizee,
I agree, there is most likely a link and i also doubt there are many people who have had 3 biologics in such a short time.  I had Raptiva on a clinical trial unfortunately my P deteriorated at an alarming rate so i was given  Enbrel.  However, it couldn't  stop the massive flare so i was admitted to hosp covered literally from scalp to toes.
My derm didn't know what to do with me (i don't tolerate high strength topicals) and moisturisers would've taken too long to halt it in it's tracks and i was feeling really ill. He more or less ordered me to have Infliximab and it worked for a short while (my face cleared overnight). He's since told me it's fantastic at the "shot-gun" approach but not long-term & that's why i'm back on Enbrel and while i would love to lay off the drugs, realistically i can't. My P is so explosive i'd be covered within the month