MTX AGAIN!!

[Cheylann]

Good morning all

A few months ago I stopped Mtx injections 15mgs due to blood in stool as well as enlarged blood cells.

Recently saw rheumy who wants me to try again however would not address those side effects as not sure MTX caused them and says the only way to find out is try again. What are we? Guinea pigs. As I can only take drugs by injection this rules out the other dmards and she won't put a case forward for the next level of drugs until I've tried MTX 20mgs. I was on 15mgs for 8 months with no noticeable improvement.

For now, I'm on nothing, in pain and quite worried and not sure whether to try MTX again.

Any thoughts?

[Haz58]

I had to come off MTX jabs after 6 months as gave me gastritis. My GP organised an endoscopy to check it out. All was clear but I didn't have blood. My Rheumatologist didn't want to try again. It annoys me how consultants differ in opinion. I've tried all DMARD tablets but out of all 4 of them I can only take sulfasalazine. At the moment I take 6 of these a day and am again on a course of Prednisolone until I get the ok to start biologics Etanercept jabs every 2 weeks as my joints weren't good with just the sulfasalazine. They really should check out your tummy. X

[Hidden in reply to Haz58]

Try a tiny pinch of bicarb in your drinking water instead of GP meds and sip in your water bottle throughout the day. I find it effective for gastritis. I find the standard meds for gastritis make things worse. Methotrexate gave this to me too. So did leftluomide.Virtually all RA meds have an adverse effect on my bowel. I suspect it is because I am on the small side and I suspect they are a higher does than I need.

[Haz58 in reply to Hidden]

Yes Leflunomide gave me the runs for 6 weeks. It was dreadful!

[AgedCrone]

if I were you I’d definitely ask my GP to arrange a GI consult.

Blood in stools is not Normal…& some rheumatologists consider only rheumy symptoms are their concern,

I know from personal experience GPs often don’t read rheumy’s consult reports..so mention what you are worried about when you make the GP appointment.

[janmary]

You don’t say whether the problems you had were investigated or whether they stopped after stopping the Methotrexate - If rheums have not done it seems you should go through your GP

[Cheylann in reply to janmary]

I should have said. The GP ordered a colonscopy and colon clear of cancer and 2 polyps removed so no problem there. What wasn't addressed by gp or rheumy was enlarged blood cells as they didn't know and said it was possibly caused by MTX and only way to know was to try MTX again.

[Boxerlady in reply to Cheylann]

In that case, my reaction would be to try it again. You're obviously being well- monitored and it can be a great medication for RA 😉

[Cheylann in reply to Boxerlady]

I probably will but obviously I'm worried.Obviously being well monitored I don't think so. The GP picked up the abnormalities on a visit for a sore mouth. Yes I have fortnightly blood tests but not sure anyone checks them unless I contact them.

Rheumatology has to be the slackest department in our hospital. If you don't contact them they don't bother with you.

I have psa not rheumatoid however symptoms are similar.

[Boxerlady in reply to Cheylann]

Sorry to hear that. My department definitely checks my blood tests and I have to confirm that before the pharmacy will release my medication. The NHS postcode lottery is awful! 😔

[Matilda_1922 in reply to Cheylann]

I have a similar problem with the rheumatology department I'm under too

[MJSlide1958 in reply to Cheylann]

Its good that he arranged the tests and removal of polyps. Did you get the all clear result from your GP before going back on MTX? I take it, it was not cancerous? Would it be a good idea to take probiotic yogurt to keep gut healthy whilst on MTX?

[Azzure]

Hi Cheylann

Seems a bit strange they want you to try again if it is causing those side effects. All I can say from my own experience is I take 22.5mg injection and methotrexate has given me my life back. I was on tablet form but much prefer injections as I have no side effects. I tried to come off methotrexate at one point and after about 8 weeks I was crippled and in a dreadful state. There are other DMARDS as well so why won’t they give you those to try? I know biologics is the next step if DMARDS stop doing their job.

Good luck but definitely speak to Rheumatolgy with your concerns.

[Cheylann in reply to Azzure]

They want me to try again as not sure if it was the MTX causing the side effects so want to see if it happens again🤦‍♀️

[Azzure in reply to Cheylann]

not sure how you took it before but I think the tablets caused me side effects and the injection didn’t. Good Luck !

[Cheylann in reply to Azzure]

Injection

[Moomin2019]

Hi, has your gp/rheum suggested a faecal calprotectin test, blood in stool could be caused as a symptom of IBD,, and IBD is a common comorbidity of inflammatory arthritis..

[Sohmui]

I am inclined to agree with "what are we, guinea pigs?" Do try and push for the next level of drugs. I suppose you mean biologics. I agree with the previous writer that MTX has been very good for me. I have had no problems. Now on reduced dose of 7.5 mg.

[B3ntl3y]

Hi Cheylann

That’s not a very nice experience

I have been on injections I have a permanent sore throat and head ache weight gain and irritability

I also take Filigotinib I have had blood tests and my inflammation levels are high and have risen again

I do wonder are they really working my hands a wrists hurt 3 of my fingers on me left hand don’t work completely stuck

Hopefully having surgery in November if they can straighten them by splints first

Truthfully I’m pissed off no one gets it

Sorry I have no solution for you

Hope something good comes for you

[Cheylann]

I get it!!

[Poshcards]

I just had to come off it, had weeks of sickness and D so bad nearly called 111, this is after 10 years on top dose! x

[Wannabeabago]

See a new Dr?

[Cheylann in reply to Wannabeabago]

I'm on the verge of asking for another opinion.

[la_femme_de_la_mer]

Do it! Another opinion can not hurt. YOU are in charge of your health, not any Dr