Back again. Following my previous post hubby finally got to see a rheumatologist (highly recommended on here and good reputation throughout the NHS)---he was VERY thorough, did blood tests, x ray, CT scan etc and said if all was well would put him on MTX. All was well explained. Results came through and showed a vitamin B12 deficiency and hub had 6 injections---will apparently be on them for life at 3 monthly intervals and he was tremendously improved and some energy returned..He had previously reduced pred from 4mg to 3mg with no side effects at all and no symptoms and also blood test at hospital showed normal levels of inflammation. Rheumy felt he had been on pred a long time hence the proposed intro to MTX. ( was told to continue with the 3mg)---- He took it for 2 weeks with no side effects but 10 days ago which is a few days prior to his 3rd dose of MTX felt unwell with mild flu like symptoms which then developed into chronic ---and I really do mean chronic with a capital C diarrhea-----which he has now had for 8 days. I rang hospital and GP--spoke to several this week and none of them feel this is due to MTX, although he was told to stop it till he felt better and GP thinks it is an infection and probably gastroenteritis. If he does not improve by tomorrow he will probably have to go into hospital and be put on a drip. Just wondered if any of you have had this symptom from MTX although I must repeat that so far the rheumy dept. and the GP surgery (2 different docs) do not think it is MTX related although they know it is a possible side effect.
In addition I had wondered if in fact the PMR has cleared away and his symptoms were actually due to the vitB12 deficiency as the symptoms of this are similar in that it causes extreme fatigue.
Thanks in advance of any comments
Cheers all
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piggylovesgolf
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What is he suggesting it is - obviously there appears to be evidence for pernicious anaemia if he is expected to need B12 injections for life.
Personally I am always sceptical about coincidence when a symptoms appears soon after a new drug that can cause it. And I would definitely have an MTX holiday to see if it makes a difference.
And don't let dehydration go too far - it can be difficult getting back to normal despite the wonder of a drip!!
thanks for your reply PMRpro. Ive rung 999 and am waiting for ambulance. Dont know what rheumy thought it was but the myriad of tests came back and the letter to GP said his vit B12 count was 178 which I gather is pretty low. Our son's father in law has this and has to take it every 3 months---some of it is caused by PPI's which both these take.
Plus:"Methotrexate (MTX) intolerance is frequent ..." and " Patients who used corticosteroids were more likely to develop MTX intolerance than those not using corticosteroids (odds ratio = 2.73; 95% confidence interval, 1.06 to 7.06; p = 0.038)"
Perhaps its nothing to do with PMR then. I thought I would ask here as I've seen it mentioned several times. He's gone to hospital now so will await some news.Thank you again
Hi again, Hospital sent him home late this evening. Bloods were all OK etc and as they were reviewing stuff ready to send him home I think with some medication hubby mentioned MTX. Doc said (didnt seems to have seen that he was on that) that that was almost certainly the cause of his problem and he would notify the rheumy (same hospital) in the morning. So hey ho--- back where we started. however the vit B12 has helped a lot and he is having a synathen (????) test anyway next monday---forgotten the name but its checking the adrenal glands to see if they are producing the steroid. Onwards and upwards👍
synacthen test - synthetic ACTH (hence the name) is injected to stimulate the adrenal glands to produce cortisol to show if they can. It doesn't actually show if they are doing it reliably though!
Interesting the doctor thought it was the MTX - once he realised. It does worry me how much they miss when they see patients though ...
Yes apparently it takes 2 hours. He has not to take pred that day but has a test then takes pred later and they re-test----I think Ive got that right. He's due back at hospital today for blood test re the MTX, paperwork fell through system. We were told the 24th then when I phoned re theses symptons they said he should have come in the previous day --the 17th for a test. Told him no paperwork received re these dates just the phone call saying 24th. Its all down to covid!!!!!!
They are using Covid as a far too convenient get-out - doctors are saying the same here! Just in case he forgets - he mustn't take pred for the 24 hours before the test which is important if he splits the dose or doesn't take it first thing in the morning.
They take a blood sample at 9am for basal cortisol, then give an injection of the synthetic ACTH and then take a blood sample 1/2 an hour later and presumably at 2 hours as well, although some places don't do that one.
Sorry PMR---the covid comment was mine not the hospitals. I was just adding that as a probable cause as it is, as you say, blamed everywhere for everything. Me being sarcy!! And yes he has been told about pred for previous 24 hours but he does just take it in the morning. Hes only on 3 mg now and doing OK so I think I might chirp up when he sees rheumy and ask if its worth bothering with given that he was much improved after the vit B12 jabs. I dont think he wants to go through this again!!
Not surprised. Did they give him any steroid as cover with being so unwell? Sick day rules should apply - 8 days of GI upset is seriously debilitating.
I had a couple of episodes of Gastroenteritis, both 6 days after the first two doses of MTX, but nothing like your poor chap has had. Hope he'll be feeling a lot better by this evening!
Thank you for response. GP said he thought it was gastroenteritis but he has had this chronic diarrhea for 8 days now. Its been quite dreadful. It was vaguely amusing when GP asked if he could get a sample to the surgery. He asked how on earth he was supposed to give a sample and GP said they would leave a special container at reception. I went along expecting to collect a bucket of some sort but was given a tube 4 inches long and an inch wide!!!!! Hub said " what the hell am I supposed to do with this?" I gave him a big jug and told him to do the best he could with it!!!!!😀He's just been taken into hospital now and I did make a point of telling the paras that he was on this MTX. So will see what happens.May be nothing to do with PMR but thought I would ask.
Hi--GP gave him sachets of something like that to take to put back the salts etc that he would have lost and also loperamide to stop the diarrhea but it didnt really. Hospital have given him something else. Hope this works---my mop and bucket is wearing out!!!!!!😀😀😀
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