PMR or Not PMR Who Knows ? Especially when your specialist goes on a sabbatical for 12 months.

[Bell4796]

Hi to all. some of you in the past may have seen some of my posts about whats been happening so here is an update, I have been having treatment for PMR for around 2 and a half years, been on steroids and methatrexate,

Steroids have caused me lots of problems and i now have 2 new hips because of them but my big problem now is l went for a check up and i have had a temporary new consultant since December as my usual on had gone on a trip to Australia,i was in hospital in December for a suspected GCA attack and thats when i saw her and she came to see me in hospital in April when i had the 1st of my new hips,i saw her a few weeks ago and now she says she doesn't think i have had pmr and kept apologising to me,she says to stay on 7.5 of steroids but not to go back on Methatrexate which was stopped due to my operations, i still have Rheumatoid Arthritis and osteoporosis ,(well thats what i was told before) and i am a bit worried as i was starting to feel better last year but now the aches and stiffness are coming back and and feeling so tired and just cant be bothered. No one has said what to expect with Rheumatoid Arthritis and osteoporosis and what treatment to take but i have been told the it can be treated with Methatrexate so if so i think i should be on it so hopefully when i go back in October she may let me back on.

If anyone can give me any advice on the RA and the Osteoporosis it would be welcome. thanks

PS.this is a picture of my hp which for 18month i was told the pain was either in my back or in the end they thought it was in my head and sent me to see a pain team who had me sent to a different hip guy who had me sorted days after an mri scan showed this, i had had an mdi scan cancelled 6 months earlier as they said it wasnt needed.

[polkadotcom]

Hello Bell, you do seem to have some problems. I don't have RA but I know it is initially treated with a DMARD - of which methotrexate is one - there are several of them so if one doesn't work, there are others to try. Again, osteoporosis is usually initially treated with a bisphosphonate. Again, there are a number of them, they all work in much the same way but if you can avoid Alendronic Acid then do so.

I do have osteoporosis and I've just had my routine Dexa scan, still waiting to know what the results are. Hopefully they will be better than the last one.

It isn't unknown for RA to present with PMR symptoms, there was a spell when it looked as though I might have RA but the symptoms disappeared of their own accord, so I was lucky there.

I do hope you get some help at your next appointment, you do sound really down, perhaps you could talk to your GP before then? I do hope you feel better soon.

[Bell4796 in reply to polkadotcom]

Hi Polkadotcom. thanks very much for the reply as it gives me a little bit of help,i had a Dexa Scan over 18 months ago but i dont know when the next one will be, i have asked but usually i do not get a reply,all i know is they do not like doing them as they are expensive,thanks again .

[Mythemm in reply to polkadotcom]

Hi Polkadot

It's a minefield finding out about all the pros and cons concerning the drugs and dosage as its all so varied.

You mention avoiding Alendronic Acid - what is the issue with this?

[polkadotcom in reply to Mythemm]

The medics are apparently now catching on to the fact that it is not the wonder drug they expected. It has a fair number of common side effects and they are not helpful. If you ask Dr Google, it has a well documented history.

[optimist-ok in reply to polkadotcom]

Dear Polkadot, I am on Alendronic acid & wondered why you said to avoid if poss. Does it cause further problems? Is there a better alternative?

[venezia1]

Hi Bell, how confusing all this sounds. I haven't got osteoporosis, but I 've had RA for over four years. I was put on methotrexate straight away, and it has been increased to 20ml weekly by self-injection. Unfortunately last year I also developed GCA, and was put on high doses of steroids (70mg) and taken off the methotrexate. They cause me awful problems but I'm told its the only treatment. Then last xmas the pain in my hips started to increase until it was hard to walk. I visited my GP regularly for painkillers, but by this summer it was unbearable, and she asked my consultant to refer me for an MRI. - it appears I have no cartilege left and need two new hips. Medics I've spoken to about it say this was caused by RA, not steroids...however, I'm in an awful bind because I can't have the operations until the steroids are down to 10mg - I've currently got them down to 15mg but if I attempt to go lower I get a GCA flare....c'est la vie!

Can I ask you what dose of steroids you were on when you had your hip operations?

It sounds as though you will need to press your medics for solid RA treatment. If methotrexate is not working for you there are numbers of alternatives including "biologics", which work much better for some people.

Let us know how you get on.

venezia1

[Bell4796 in reply to venezia1]

Hi Venezia, thanks for the info, i have had a good chat with my doctor today and i am seeing my rheumatalogist in a couple of weeks and i will be going back on the methetrexate then,they waited because they thought my wound was not healed properly, i was on 5m of steroids when i had my op and i went uo to 20 straight after due to coming of the methetrexate, down to 10 and 7 now and feel bad with aches and really tired but i think i will be ok soon.

[lynabelle]

It makes me so angry that we all get treated so badly! Ok so it's not life threatening but it is painful ,distressing and debilitating.

Going to see rhemy on Wednesday and ask for MRI scan as some days i can hardly walk, if he says no then I will ask to be referred to someone higher ,I am not being fobbed off this time, keep fighting all, I know that sometimes it gets frustrating but we must get answers to our questions, good luck everyone, chin up and keep fighting x

[trish29 in reply to lynabelle]

Go for it lynabelle!! You sound much stronger than a few weeks ago . If you're not happy with your treatment keep asking to see someone that can help you . I hope your Rheumy listens to you and that your appointment goes well. I get my results on Thursday from my spine x/rays -please please let them be not too serious!! I know how you feel if you are struggling to walk -this condition is so hard to live with ,it's so hard to keep smiling but we musn't let it beat us . Thinking of you and other sufferers . Keep in touch on how your Rheumy visit goes . trish 29

[jinasc]

Bell4796

ARC has a helpline and they are brilliant at dealing with Rheumatoid Arthritis (as an aside Methotextrate is a gold standard treatment for RA, according to the Rheumatologist Nurse).

The National Osteoporosis Society is well worth contacting. The both have comprehensive websites. Worth taking a look at..

[Bell4796 in reply to jinasc]

Hi Sabucca , thanks for that, at the moment i am in limbo, my local doctor who i see as well as the other who has left suggests i speak to the nurses where i have my blood results done to find more info, also she checked and my last bone density scan was in 2010 which showed my bones were small then so she suggests i i ask my new specialist about that in a couple of weeks, she has order me some emergency physiotherapy for my hip operations as these are starting to hurt again so i should be a bit better soon. thanks again

[jinasc]

optimist - OK you wrote:

Dear Polkadot, I am on Alendronic acid & wondered why you said to avoid if poss. Does it cause further problems?

Yes it can cause major problems due to the side effects - the FDA advise that patients must not be given it for more than five years (read the side effects).

Is there a better alternative? Yes there are alternatives, including a once a year Strontium Renalate, but discuss the other options with your GP.

The National Society for Osteo is a good place to check them out.

[55grove]

What to do and think about Alendronic Acid? I have been on it for some months now. I snapped a rib in May. Despite a life of extreme sport where I amazingly did not break a single bone! I will question my GP next visit. I have had small eruptions through my skin lately which bleed profusely and take a few weeks to heal. Is this one of the side effects?

[JANNYROSE]

Alendronic Acid shocking pill. Took one and only one had a immediate reaction (around 9mins) and spent the next three months with severe diarrhoea.

[optimist-ok]

Thank you for your reply to my query about Alendronic acid, Sambucca. Sorry its a late one! Haven't had a very good few months lately. Hope things are progressing with other readers.