I have just had a landline call from a Rhuemie. I am hard of hearing and lip read. First mistake on their part . I asked him to relay the conversation to me thru my husband. They chatted away then my husband answered for me (second mistake) I did not know what they were discussing. I was getting so angry. My OH then said because of the problems I was having ! he wanted me to try another drug (all explained to my OH) but not to me. Then I heard my husband say so she has to take with the steroid. I felt this was unfair that this discussion was going on and the aliens wasn't involved. I asked that the Rhuemie discuss with my GP who can explain all to me. Am I wrong to be so cross. Do we who suffer with PMR all suffer with dementia and treated like idiots. The drug mthotrexate (my OH spelling)
Another ANGRY Person: I have just had a landline... - PMRGCAuk
Another ANGRY Person
I wouldn't have that at all - and if the rheumy wants you to try methotrexate alongside the pred they should arrange blood tests and a session with a rheumy nurse before you start and there needs to be a mechanism for ongoing monitoring, frequent in the first 3 but less often later . I'm sure MrsNails can tell you more about mtx than most GPs who are allowed to write the prescription but not on their own, only as part of a shared care arrangement.
Is there any real justification for you starting mtx? What dose of pred are you on? Have you had problems reducing the pred dose?
I dunno - sometime I feel some doctors treat us as aliens!!!!
I had a flare in Feb. Went up to 8 mg From 5. Saw GP asked if I could go to 10mg. She agreed 10 mg for two weeks then start tapering but also said she wanted to refer to Rhuemie to see why I could get below 6 1/2? Then this call today which was supposed to be video call but I had asked to rebook cos we were going away.
That when he told my husband about trying another med, and my hub told him a good idea, that’s were I got angry because I didn’t know what they were saying....and who is my OH to agree to medication for me.
Does aa have to be in this mix because I get on prescription but don’t take
Thank you for replying
Ps tapering going okish
If I had got to 8mg on my own nothing would persuade me to take mtx I'm afraid. That is already what is called a physiological dose (about what the body needs to function) and below that any reduction must be matched by a return of adrenal function topping up the artificial steroid. mtx won't aid in that process, only time and less pred and there are no guarantees the mtx will get you to a lower dose,
The opinion is it takes a year to see a significant difference in pred dose and the study that found that did a follow-up at 5 years where they found there was no difference in pred-related adverse effects between the two groups, with and without pred. Many of the so-called pred side effects can be due to PMR - I had several during the 5 yars of PMR without pred. And when I did try mtx I developed aches in muscles and joints that were as bad as in untreated PMR, I was constantly hungry and gained weight which hasn't ever happend with pred, I bruised and the fatigue was overwhelming. That doesn't happen to everyone I hasten to add but several people have said they feel awful on mtx - it has its own side effects too,
I am hoping his letter to the GP will take a couple of weeks to arrive by which time I will be on 7mg Pred. Doing DL DSNS taper. I am not going to rush to suit them or take any other meds that aren’t necessary. Thanks for your reply.whatever happened to patience on Drs side. They certainly don’t know how to treat patients since Covid 19
Not good enough! And every right to be cross.
That’s not good at all, there’s a lot to consider & tests to be arranged, at the very least you need a copy letter with the Plan Outlined.
I’ll send you one of my Posts then you can skim through my Profile to see what else l’ve written on MTX
MrsN
Ouch! Fume away I’d say. Does OH understand why? The doc should have known better.
You are quite right to be furious and there was a decision to be made. I would be livid. Your solution was a good one. I would disregard the content of that one and start again. Methotrexate does not help or suit everyone, this change needs you to be fully on board. A letter of complaint might be in order and some husband re-training too.
Thank you all for your replies. They have certainly taken away some of my anger . Don’t know how to put this thanks on here for all to see
I would insist that they use telecommunication that translates what is said to text somehow, or, at a minimum, do a Zoom meeting where you can read their lips AND ask they type in the chat box the essence of what they are recommending/saying. That way YOU are in control and you can type or speak back your questions for better communication. When we zoomed with my aunt who could not hear, this is what we did...takes some practice but it works. Good luck.
Agreed: for something as important as a change of medication the communication should be direct with you so you can provide (or decline to provide) informed consent. A video call, or at least email or written details, if face-to-face is not possible.
I agree with PMRpro that mtx is most likely not even needed in your case. I had a thought the other day, which I posted in a reply elsewhere. Now that they are discovering that some covid patients are "long haulers" the doctors need to be reminded that all PMR patients are also long haulers. I don't know why they have so much trouble grasping this fact as there are loads of long haul illnesses for which they are quite happy to accept that treatment is indefinite: diabetes, all kinds of arthritis, lupus, just to start on what could be a very long list.
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