Can you help me deal with this? Pmr Giant Cell and RA.

Hi Jenny Hang on in there it will get better, My blood count was zero as well and I struggled on for another 5 months before my GP put me on steroids. The side effects can include mood changes and of course its a struggle coming to terms with it but you will find your own way in life. I was able to resume light Zumba and a dance class untill osteosrthritis reared its ugly head. Dont fight things rest up as much as you can until tablets kick in. Wonder if you may need even higher dose I think I read that some people even start on 60mg Im sure Mrs O and Eileen will give you some good advice when they se your text. Why are you feeling guilty you have human and prone to iilness just like everyone else. This is a brilliant forum for support and they have helped me so much. By the way the steroids do affect your sleep pattern and many of us are to be found on our computers in the middle of the night but you will settle and remember best thing is rest rest and more rest. Cosset yourself with good book or movie . Above all remember IT WILL GET BETTER xx

Jenny

Reading your posting I would suggest you need to an immediate visit to your GP or alternatively, ring the Consultants Secretary and tell her the situation and ask for the Consultants advice.  It sounds to me as if the starter dose is too low.  I was started on 60mg and within hours the symptoms of the GCA had subsided.

The Methotextrate is the gold standard treatment for Rheumatoid Arthritis.  You should also be on Folic Acid when taking Metho and have a booklet and a Nurse you can contact for information.  Methotextrate is also a steroid sparing agent.

If you go to www.pmr-gca-northeast.org.uk and look under Support Groups you might find that there is one near you. The BSR Guidelines on Diagnosis and Treatment are also on that site.

You will get a handle on it all, it just takes time, remember you have just been diagnosed with an illness you have never heard of and it is a shock as I well very know.  Don't try to fight it or hide it from family or friends.  Learn to say 'NO' and treat yourself like a pampered princess.  You will come to terms with it all and you will learn how to cope.  Learn as much as you can about it all as knowledge is power and it enables you to continue your life, albeit in a different style.

Do let us know how you get on please.

 

Hi Jenny, I'm so sorry to read of how poorly you have been, but if you do have PMR, GCA and RA, then you have been prescribed the usual medication to deal with it all, with Prednisolone being the best treatment for PMR and GCA, and MTX (Methotrexate) the gold standard treatment for RA.  It isn't unusual to have normal blood markers with any of these conditions.

The 40mg starting dose should by now have given you at least a 70% reduction in your body pain, although some people diagnosed with GCA do have a higher starting dose of 60mgs of Pred.

It may be wise for you to reconsider your choice not to take the MTX if you haven't had any improvement in the next week or so.  Interestingly, I was at the AGM of our National Organisation, PMRGCAuk this week, where the guest speaker, an eminent professor of rheumatology and expert in the field of research into PMR and GCA, expressed the view that if there isn't much of an improvement in the symptoms of GCA within four weeks of starting Prednisolone, then MTX should be introduced alongside as a steroid sparing agent.  In any case, you will need MTX for the treatment of RA.  There is always a risk of side effects with any medication but you will/should be closely monitored throughout by your GP/rheumy.  You should also have been prescribed Folic Acid to take when on MTX

As far as your sleep is concerned, I do so empathise as I remember almost climbing the walls on 40mg and used to lay awake for hours at night, but do rest assured that as you reduce the steroid dose, you will gradually start to have better nights.  Meanwhile, rest as much as possible during the day - rest is essential to give the steroids chance to get control over the inflammation, and learning to pace yourself is one of the hardest lessons you will learn in the early days of PMR.  Many of us have learnt to our cost that if we overdo things when we suddenly feel better on a good day, the pain comes back to bite on the next.

If you can get out each day for a little walk, no matter how short, that will help to lift your spirits, and meeting up with a favourite and understanding friend for a cuppa and a chat can work wonders.

Do try and stay positive - you are at the worst stage of the illness but it WILL get better, I promise. 

Hello Jenny.

Really sorry you're going through the mill, but as the others have said, it will definitely let up.

Not so sure why you're so nervous about MTX in particular, I've been on it for six years for RA and I'm still kicking.

As far as I can see your main trouble right now is lack of sleep. That is bound to colour your perspective on things. I agree with the others that taking care of yourself and getting what sleep you can when you can is important. One of the worst side effects of being this ill is that we tend to beat ourselves up about it, adding insult to injury.

Try treating yourself as if you were your own sick child. You wouldn't get angry with your child if she were sick, would you?

Nurture yourself, rest a lot, give yourself what you need right now to feel better... (while taking dietary considerations fairly seriously – alcochol only adds to the burden on your liver that the drugs already have to deal with).

Give yourself what you'd give to a sick child and no need to compare yourself to others worse off than you – it's only another way of giving yourself a hard time.

And for the long term keep in mind, there are supplements you could take to reduce the toxic effects of the drugs – you'd want to see a nutritionist for that. But right off the top, I'd recommend fish oil.

Hello Jenny

I can really empathise with your situation, I have also been diagnosed with GCA/PMR and RA and went from being fully fit and active 52 year old to a gibbering wreck with seemingly no control over my legs, hands, neck and shoulders in a short space of time.  I had never heard of GCA or PMR, I also had was a permanent headache across both temples, slurred speech and loss of vision - I ended up in A & E.  They started me off on 120mg prednisolone because, they thought I as am a big girl - 60mg was prescribed by the eye specialist and 60 prescirbed by the rheumy.  I went off the planet and cannot remember much about anything for about 4 months afterwards.  Prednisolone side effects are a nightmare - mood swings, tears, impatience, loss of sleep, mind racing etc. etc.  It took me 14 months to get off prednisolone - I really despise them.  Methotrexate was started 6 months after diagnosis, and to be fair I did not appear to have any problems with side effects.  I also took Folic acid, calci-chews, omeprazole and aspirin.  I got back to fully fit, and back in full time work 12 nonths after diagnosis, only to relapse 8 months later with the symptoms even worse than the original attack.  I have now come to terms with having to take medication, prednisolone in particular - I have real issues with the side-effects both physical and psychological.  To cap it off I contracted Pleurisy in January this year and whilst a number of GP's prescribed double dose antibiotics, none of them told me to suspend taking the methorexate until I saw the rheumy in April when I was so short of breath that I ended up in A & E again - Mtx and antibios do not mix.  They put me on 50mg pred, stopped the Mtx, all the rest are still taken on a daily basis and they have put me on Leufluodmide - another steroid sparing drug, which does not have respiratory side-effects of Mtx.  Today I am down to 18mg pred.  I have a huge moon face and fluid retention - due ot the steroids, as I reduce they should go, but I feel like a giant water filled balloon when I walk - think of the blueberries in Charlie and the chocolate factory.  In the last 2 weeks my legs have found a mind of their own and I am very unsteady on my feet - not quite sure where this symptom is coming from yet.  My hands are not strong enough for me to use crutches, so am in a wheelchair for the time being - its not permanent, but it means I can get around independantly.  I am a very independent person, having always being the one providing the care and cannot get used to having to ask for help, so am exploring different ways of doing the same as I did before.  Any gadgets that help my mission are Ok by me.  Take heart, you will get better, it does take time, rest, and patience whch can be quite a big ask of yourself when you have prednisolone on your shoulders.  I would not hesitate to take the MTX, so that you can reduce the steroids, they take 10 - 12 weeks to kick in fully, and I can only speak from experience, they appeared to suit my conditions, but they do not suit everybody, and I am now one of those because I also have asthma.  This time round I will reduce the pred very, very slowly, I do not want another relapse.  I will develop pacing of activities - something else I have difficluties with doing.  But I got over it before, I will get over it again, and so will you.  I only sleep about 2 - 3  hours per night and maybe an hour in the afternoon.  As the pred reduces, my sleep should increase, as will yours.  The mood swings, will also go as you reduce the pred, but for now, with your symptoms, I think you need to go back to the Rheumy, you may need to go up to 60mg to get rid of the GCA symptoms and then reduce.  I would be happy to answer any other questions you may have.  All the very best wishes.  Jan xx

 

Hi Jenny.  My heart goes out to you.  I hope you find some relief soon.  You're right about how helpful it is to have all these wonderful people to share our stories.  I've been dealing with a relapse of PMR symptoms that sent me right back to my original dose of 40 mg of steroids for the past month.  I start tapering again tomorrow, but will take it a lot slower that last time thanks to eveything I've learned on this forum.