Now confused....

[wendythom]

Hi

I have had PMR for many years now and am currently on 10mg of pred, taking 9 every other day to try to reduce.

I saw the rheumy a couple of weeks ago and he says I HAVE to take alendronic acid. I have taken it for 2 weeks now and have had an irregular heartbeat which I think must be caused by the drug. I have never had that before.

He said I HAVE to take methotrexate to avoid steroid induced diabetes and steroid induced osteoporosis. I asked him for a dexa scan but he didn't answer. Since my hip replacement last year I have also had sacroilitis and find that pred helps with that. The rheumy said that wasn't possible, but I do know it does. He also said I might have ankylosing spondylitis. He sent me off for some blood tests but I don't know the results.

The following day I had an appointment with the pain specialist. He is arranging for me to have an MRI. He thinks I have a disc problem as well as sacroilitis and will do some injections when he knows what he is dealing with. I felt he was right with that.

I have been sent an appointment to see the Rheumy's nurse specialist to be signed up to methotrexate. I would rather have the MRI and injections and then see what we are dealing with.

The Rheumy wasn't a Consultant- I think he was a Registrar or Doctor. The Pain Specialist was the main man.

Can anyone give me some advice please? I don't want to be in trouble for ignoring the rheumy's advice and am not sure what to say to the nurse specialist. I feel the PMR is under control with the current level of pred and am hopeful the pain specialist will help with the other problems. I think I will have a chat with my GP but wondered what you lovely people thought. I do appreciate this website and your very helpful posts.

Thank you!

[SheffieldJane]

Hi wendythom, oh dear, your Rheumatologist’s instructions re Alendronic Acid would make me unhappy without a DEXA Scan that indicated that it was absolutely necessary. It is a drug with potentially harmful side effects that seems to be overly promoted to my mind. I would also be unhappy to be prescribed Methotrexate when I was not struggling with Prednisalone and had not been told that I had developed steroid induced diabetes either. My doctor has told me that it is reversible with exercise and diet. I would also be more reassured by the pain specialist’s approach. What is your pain specialist’s background? Can you seek his view? I would want another opinion before adding in the new drugs especially as you are experiencing symptoms.

My DEXA Scan showed no indication that I needed A.A. and I have not been pressurised about it since. Some people have found Methotrexate has helped them to come off steroids more quickly, is that a problem for you? It doesn’t suit everyone and is not without side effects. I would prefer to make a brave effort to taper off steroids and only resort to Methotrexate as a last resort. I am simply giving an opinion as a non medical patient, diagnosed PMR 27 months currently on 7 mgs, hoping to reduce further when I get over a chest cold.

[wendythom in reply to SheffieldJane]

Thank you Jane- you have reassured me with your logical view and I will not sign up to more drugs without good reason.

Very best wishes

Wendy

[yogabonnie in reply to wendythom]

I agree with Sheffield Jane!

[piglette in reply to SheffieldJane]

My GP kept going on about me taking Alendronic Acid even though my Dexascan was pretty good. He said that as I had been taking pred for a while I should take it. It was rather like Groundhog Day. I used to think I had won the argument then see him again and we would go through the same argument. I am now going to a different GP which has got over the problem, for the time being at least.

[BirmLiz]

Hi Wendythom. I too was pressured to take AA (or acid tabs as I called them!) but I refused. To my personal view I had already had to fill my system with a toxic substance in order to move and be pain free. Why take more when I didn't know if I needed it? I was lucky that I was due a DEXA scan and told the Rheumy that I'd go for that and if there was a problem, would go back and discuss it with her. The results came back as normal so I wasn't pestered. Why are they pushing drugs without checking if people need them? I wholeheartedly agree with Sheffieldjane to ask your pain specialist for a second opinion.

Hope everything is sorted soon, take care.

[PMRpro Ambassador]

For a start - bisphosphonates are associated with an increased risk of atrial fibrillation

ncbi.nlm.nih.gov/pmc/articl...

I have atrial fibrillation which is probably due to the autoimmune part of the PMR - and nothing will persuade me to take a bisphosphonate anyway! My bone density is fine - it was fine 3 months after starting pred and was still fine after over 7 years of taking pred, much of the time at between 10 and 15mg/day. Loss of bone density is NOT a given with taking pred and no-one should blackmail any patient into taking anything. Dexascan first - then you review the situation. But if you have signs of a/f as a result - I wouldn't take it except under the guidance of a cardiologist.

To the best of my knowledge, methotrexate (mtx) will NOT prevent developing steroid-induced diabetes or osteoporosis. What WILL help is to cut carbs in your diet drastically. There are plenty of people on this forum who will vouch for that. And it will help get rid of any pred weight. All that is possible with mtx is that MAYBE you will be able to reduce to a lower dose of pred. Maybe - there are no guarantees. The latest recommendations for the management of PMR suggest considering using mtx - but only in agreement with the patient. See Recommendation 7 :

rheumatology.org/Portals/0/...

I have had sacroilitis - and pred DOES help, in particular steroid injections by higher oral doses also help it. It is actually very often part of the PMR. PMR and ankylosing spondylitis may presesnt looking very similar - and AS often starts in the sacroliliac joints. However - I have sacroiliitis but I do not have AS. Do you have nighttime back pain? Do NSAIDs help any of your pain?

I would not agree to adding mtx until your pain specialist has done his bit. I had tremendous help at the local pain clinic where I live - and a lot of my problem was due to spasmed back muscles.

[wendythom in reply to PMRpro]

Many thanks to everyone who is giving such helpful advice. The rheumy wanted me to reduce the pred, hence the methotrexate. However I have very few problems with pred and am happy trying to reduce the dosage very slowly. So I will ask for a Dexa scan, refuse the alendronic acid and methotrexate and see what the pain specialist / MRI come up with. This site does give the reassurance one needs to have the confidence to refuse certain treatments. Thank you for your amazing support and best wishes to you all.

[Chihuahua1]

I too had a reaction to Alendronic acid. You could see your GP, tell him of the issues and ask him to change you to Riseodronate. I found that one gave me no side effects. I would also query with him whether the Methotrexate was necessary when there appeared to be no problems with steroid induced diabetes. It does after all have some really nasty side effects for some people.

[PMRpro Ambassador in reply to Chihuahua1]

I just want to emphasise that all the bisphosphonates have the risk of the arrythmia problem. If anyone develops palpitations or the like after starting it - don't accept the doctor's usual dismissive "it'll be the pred", get it checked out. It doesn't matter WHY you have an arrythmia, it is still an arrythmia and needs to be investigated. Even if it IS just the pred.

[Lochy]

I had my 8 monthly, 10 minute rheumy appointment last week. Came away feeling very despondent. Nice enough man but I don’t feel he listens. Or if he does he doesn’t respond!!

Thinks I’m struggling to taper but I said I’m not. I didn’t taper for a while as was having treatment for another health issue. He seemed surprised I hadn’t continued despite treatment so it looks as if I’ve made little progress since xmas. Had a flare in February too so I was right to not try and taper I felt. I’ve successfully reduced to 9 over past couple of weeks and feel stupidly pleased. His reactions are so underwhelming I feel like a naughty schoolgirl.

He’s recommending methotrexate but has given me the choice so that I’m thankful for. He wasn’t interested in discussing how successful it is in PMR. I’ve said I’d prefer to slowly taper and if I struggle I’ll come back to him. There was no reference to the fact I’m not on AA or Omeprazole.

He appeared impatient when I tried to describe how I’d been since last appointment. It is hard when you’re summarising your health over an 8 month period, in ten minutes, when there’s been numerous ups and downs.

I think that’s why I leave a bit depressed as you realise how alone you are on this journey......apart from all you wonderful people on here.

I know it’ll be another 8 months until I see him again so I probably shouldn’t get too worked up!