Waiting and waiting....

[wendythom]

Hi

Further to my earlier post I saw my GP who requested a dexa scan in February. Apparently if I haven't heard about the appointment by September I have to give them a ring. Similarly 2 consultants have requested MRIs- again I am on a waiting list.

The nurse specialist from the rheumy dept is very keen for me to start methotrexate but I am keen not to, at least until I have had the scans. I am in the process of reducing - slowly - from 10 to 9 although my ESR is 52 which isn't great.

I am frustrated by the delays for all these scans and by the haste to get me off pred. I was given a long list of potential side effects for the methotrexate, from mouth ulcers to nausea which didn't persuade me to change my view. I want to take meds that make me feel better, not worse!

Thank you, dear friends, for your help and support.....

[Christophene47]

I can understand your frustrations; I am in the US and waiting is not a problem usually. But I fully agree; I understand what you are saying. Prednisone softens the bones, but why the rush to get us off the drug that is helping.I doubt a skeleton can collape from prednisone even if needed for a time. I was put on methotrexate, was on it for 6 -8 weeks, did nothing but give me daily diarrhea. I changed to a new rheumatologist who did not approve of methotrexate for me( and I did not suggest my feelings to him about it); and saw a hematologst at the recommendation of first rheumatologist who also disapproved (2 out of 3) so I stopped it. Don't feel any different. I realize the methotrexate dose given is low as opposed to a cancer patient. But if taking a drug disturbs you psychologically , that effects health too.

But you do need the DEXA in any event. But the general principle of stabilising people on a cancer-causing drug. in preference to Prednisone is beyond me.

[Soraya_PMR]

Just had a quick look at your previous posting re back issue and sacrifice iliac strain??. Yes, I agree with you, avoid metho until you know what you’re dealing with from MRI results and bone scans. I can’t see any sense in muddying the waters with another drug and it’s side effects. You’ll not know where you stand.

The back may be nothing to do with pred or PMR. Maybe it is. But you won’t know til scan results. Same thing re osteoporosis, deal with it when you KNOW. Also I see a comment that your rheum made re diabetes, but if you have your blood sugars under control with a sensible diet, then why worry about something that may or may not happen in the future.

How long have you been on pred?

[PMRpro Ambassador]

Well I have just, in the interests of research, tried methotrexate for 4 weeks. The first week was better than expected, but I will NOT be taking any more!

I had a headache for 3 days in the middle of the week and when I needed the toilet, I needed it NOW which wasn't conducive to being away from the house! I itched over much of my body. The fatigue started the second week and got worse for the following 2. I felt worse than I ever did with unmanaged PMR. I felt better just in time to take the next dose. Quality of Life was almost zero compared to jsut pred.

I have similar back problems (sacriiliac plus spasmed muscles), pred helps it, methotrexate won't.

I am at a medical science meeting and have just had a long conversation with an immunologist who is adamant that pred isn't too bad - adding further really immunosuppressive drugs is less good. She and others believe that having an autoimmune disorder may be protective against developing some cancers - but the patients are treated with immunosuppressive drugs and they really don't know the entire effect on the immune system. She thinks it should be kept as simple as possible.

You are almost at a physiological dose, if you get lower your body will start to produce cortisol to top the pred up to the level of corticosteroid your body requires to function. There will be little effective change. That is going to be my argument when I next see the rheumy.

My bone density had not changed significantly in over 7 years on pred - it does not always have an effect, when it does it may well be simply speeding up the natural process for you. But you won't crumble in a little heap. People with low bone density do not always have fractures - people with normal bone density do. There are a lot of things to do before adding methotrexate and a bisphosphonate with their potential side effects.

[Soraya_PMR in reply to PMRpro]

Thanks for doing that research for us! Doesn’t sound as if it was much fun.

Interesting comments from immunologist.