Concerns about taking the additional medicine and steroids

[lucy65]

Hi Ive just joined up having been diagnosed with PMR within the last month although symptoms started around Christmas.  I'm 51 so although young to get it apparently my symptoms were text book! At first I was adamant about not taking the steroid route as I prefer a more holistic approach to health.  However, the reality of living with the pain and seeing how much it was already restricting my movement I gave into to taking them and must admit I am very grateful that there is something available that can help me right  now.  My GP seems very supportive and am on a planned reduction starting at 15, then reducing to 12, 10 and by 1 each month whilst continuing to monitor etc.  My immediate question now I would appreciate advice with is the additional medication I have just been prescribed alongside the steroids.  Taking those was a big thing in itself but then additional medication which  sound like they can cause other problems and I'm not sure if they are really necessary or whether there are alternatives? The medication is Alendronic acid, Lansoprazole,      colecalciferol/calcium - this one I think is just vitamins so I'm not so concerned about this one?  I really dont want to be taking anything I dont need to but at the same time dont want to create further problems in the future. Any experience or advice would be greatly appreciated.  many thanks in advance

[suzy1959]

You can get a lot of information on the internet about Alendrotnic Acid, but in principle, a lot of us here would not take it unless there was a good reason to. What should happen is that you should have a DEXA scan to tell you about your bone density and then you are better informed to make a decision. I have had 2 Dexa scans so far ( the Rheumy would not order it, insisting that it wasn't necessary, so my GP ordered it) and my bones are absolutely fine so far after 3 years on Pred. so I am not taking AA. Previously, I had been persuaded twice to take it by 2 different Rheumys, threatening me with spinal and leg fractures if I didn't. I am not seeing those Rheumys anymore! 

I agree with you about the calcium - are you also taking vitamin D as they should be taken together?- a lot of us take ADCAL which has both. 

As for the Lansoprazole, I am on that, the lowest dose, partly because if I try to get off it, I immediately get reflux and indigestion. I was on it before I started the Pred. Again, you may want to read up on it some more. Some people take Ranitidine instead, or, if they don't have too much of a problem, they take live yoghurt with their Pred. to protect their stomach.

What I have learnt is that we all have to inform ourselves about our treatment as the doctors don't know everything!

[PMRpro Ambassador]

Suzy has covered the lot really. 

I was handed AA, took 4 tablets and did the research over that time and decided, no, wasn't taking that without good reason. The GP agreed, surprisingly, and I stopped until I had a dexascan done. It was fine, wouldn't have been considered for anything more than calcium and vit D supplements (your colcalciferol and calcium) which in fact are the standard at that age (under 65) . I had another dexascan nearly 4 years later which was essentially unchanged. There had been no need for AA. It's a different matter if you are already osteoporotic - but these days not even over 65 year-olds are necessarily so! So ask for it to be checked first.

Some people struggle with the PPIs (lansoprazole) - and they can contribute to loss of bone density too. You can also use ranitidine/Zantac, same effect on acid, fewer side effects.  I've never taken a PPI, but some people do find that plain white pred tablets irritate their stomach, not all of us though. Many people on the forums have managed just with yoghurt and taking pred with food.

A planned reduction is fine - except it is very likely the PMR wasn't listening!  I'd personally prefer to reduce 1mg at a time from the start, top experts advise not reducing more than 10% of the current dose at any one time. Many patients have found a slow plan of this sort very helpful and have managed to reduce steadily without discomfort to lower doses than previously:

healthunlocked.com/pmrgcauk...

There are other versions - this is mine, it worked for me and is being used in a clinical study on steroids use in PMR in the north of England.

My PMR symptoms started when I was still 51- it took until I was 56 to work out what it was and it was me who got the answer in the end - 5 years of no pred was enough to make me welcome the effect with open arms! I wouldn't go back - and I have had some very interesting pred side effect problems! 

Good luck!

[lucy65 in reply to PMRpro]

Thanks too for sharing the link on reduction, I've had a proper chance to read it now. Grateful to have this info before I start reducing, and that a slower approach potentially equals less pred in the long run - hopefully!!

[Rose54]

Hi

I was diagnosed in Sept 15 started on 15 this week have reduced to 10 however after going from 15 to 12.5  I am only reducing by .5 and it has 6 months to get here.

I do work full time and find I am unable to do have the things I did .

I am 62 and was told for 2 to 3 years before diagnoses I had CFS

Take it slow plenty of rest and sleep

Good luck Rose

[lucy65]

Thank you all for your comments and experience, much appreciated! I definitely wont be picking up the prescription for the acid! Will probably take the vitamins and use yoghurt instead of lansoprazole.  Thanks again will keep you posted!