just a follow up re previous posts on MTX - PMRGCAuk

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just a follow up re previous posts on MTX

piggylovesgolf profile image
16 Replies

Hi folks,

Just thought I would check in and report what appears to be a bit of good news.

Following on from the MTX episode and the chronic diarrhea hubby had an appointment this morning with the jolly doc (routine thing to do with blood pressure) and it appears that his blood tests show an ESR reading of less than 2. At the onset of PMR it was 68. Jolly doc says it doesn't register below 2 so less than 2 is the lowest it can be. This sounds like good news!!! He is quite certain that MTX could not have caused the chronic diarrhoea as the sample showed a bug pyloris but he said the MTX would make it worse although was not the cause.

He was quite happy for hubby to reduce the pred slowly and thought the .5 a month was a good idea and that if it didnt work he could then try the MTX again. He said it doesnt matter which way you do it--the idea is to get you off the steroids.

Just thought I would pass on some good news (I think thats what it is!!!) as there seems to be light at the end of the tunnel and perhaps he will eventually get back to golf again.

I live in hope!!

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piggylovesgolf
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16 Replies
SheffieldJane profile image
SheffieldJane

That’s encouraging. Immunosuppressant drugs do tend to allow infections to take hold. I find this with Pred + Tocilizumab. I have also been tested for Pyloris and await the results. Fingers crossed for you both.

piggylovesgolf profile image
piggylovesgolf in reply to SheffieldJane

Many thanks SJ. The rheumy people didn't actually think MTX had caused the diarrhea but I have read so many adverse reports on this forum that I thought it best to stop it and just try the slow taper. I hope I haven't done him an injustice here. However jolly doc did say it doesn't matter which way you do it - - - just get off them. He can always go back to the MTX if this doesn't work.

SheffieldJane profile image
SheffieldJane in reply to piggylovesgolf

methotrexate side effects make pretty horrendous reading ( but what doesn’t these days?) however, it works for some people. I’ve side stepped it for years.

powerwalk profile image
powerwalk in reply to SheffieldJane

Jane, i tested positive for pyloris a couple if years ago, it wasnt treated at the time, im wondering if its somewhat the cause of this awful abdominal pain i have. Interesting to see how your test goes.

SheffieldJane profile image
SheffieldJane in reply to powerwalk

I am in constant lower abdominal pain. We are immunosuppressed and I guess all sorts of opportunistic infections get in. My bowel and bladder kind of swop about and my eyelids are inflamed. I’ll let you know about the Pyloris. On we plod!

powerwalk profile image
powerwalk in reply to SheffieldJane

My wellies are nearly worn out with the plodding!!! Yes do, good luck!

piggylovesgolf profile image
piggylovesgolf in reply to powerwalk

SJ and power walk - - - the chronic diarrhea lasted about 10 days and it took 3 weeks before he started to feel some semblance of normality. Not sure if this is of any help but just giving you both the timescale. Good luck to you both

SheffieldJane profile image
SheffieldJane in reply to piggylovesgolf

Thank you! Mine has dragged on for almost 3 months now - nothing helps much.

powerwalk profile image
powerwalk in reply to piggylovesgolf

Thank you for that.

PMRpro profile image
PMRproAmbassador

Excellent! But the MTX was probably implicated by making it more likely you would develop an infection...

piggylovesgolf profile image
piggylovesgolf in reply to PMRpro

Sorry--not quite understood. Do you mean MTX might make him more prone to picking up an infection?

PMRpro profile image
PMRproAmbassador in reply to piggylovesgolf

Yes

piggylovesgolf profile image
piggylovesgolf in reply to PMRpro

👍 thanks

MrsNails profile image
MrsNails

Hi PLG - l have not been around much for the past week; l’m a long time patient on MTX & when l started on it l was given a Record Book plus some Info Leaflets…..

One of the things it highlighted was about certain foods such as unpasteurised milk, cheese, uncooked egg (in fresh mayonnaise) meat not fully cooked ie a rare steak & shell fish such as oysters. This is because we maybe inclined to pick up an intestinal infection.

I just thought l’d share that with you for your reference.

Hope your other half improves soon.

Best Wishes

MrsN

piggylovesgolf profile image
piggylovesgolf in reply to MrsNails

Hi Mrs N and thank you for that info. The hospital did give us some leaflets about MTX but dont think we got anything about food. Interesting though-----not guilty of most of those foods except prawns (diet could be better though!!!) but hubby does have some stomach issues---it runs in his family and he does take omneprazole (cant spell it) so he may be a bit prone to picking up things now. Jolly doc was quite definite that the MTX could not have CAUSED this diarrhea episode but said it would have made it worse and also my GP (same practice but i have different doc) rang with the sample results and when I asked if it was caused by this MTX he said "well it certainly wont have helped". So its beginning to look like he got an infection, perhaps because his immune system is compromised and the MTX has just magnified it. He has just cut pred down from 3mg to 2.5 and about 8 or 9 days gone by with no effect so far--so fingers crossed.Many thanks and good wishes-- PLG !!

PMRpro profile image
PMRproAmbassador in reply to piggylovesgolf

isn't it strange - this

medicalnewstoday.com/articl...

lists diarrhoea as a side effect of MTX along with a load of other GI effects.

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