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

Bones, joints and muscles
1

Could anyone give me some good advise? You see I am in a bit of a mess at the moment and could really do with your help.

I have been having really bad pains in my shoulders, neck, arms and hips. My doctor sent me to a rheumy and dispite having zero negative blood results and a two hour consultation the Rheumy hold I have PMR Giant Cell and Rheumatiod Arthritis (really bad deformed fingers).

I was immediatly but on 40mg Prednesilone and Methotrexate. I have not started the Mxt yet as I side effects are supposed to be really bad.

My Rheumy wants me to take 40mg of Pred. for a month then taper down, I have now been on them for three weeks and are still getting shooting pains in one side of my head and it still feels like a thumping pressure I can also feel my vain swollen.  I do not get a jaw of blurred vision.  Are these symptoms normal after three weeks? 

Since I have been told that I have all these health problems I am having a really bad time coming to terms with it.  I have gone from healthy 51 old expecting I may just have PRM to a nervous wreck who cannot sleep, think. I cannot see much of a future all I see is years of health problems and really strong medication.  I have been told dont drink, eat sugar.  I seem to be angry and crying a lot and thats is not like me.

I sorry to go on about this as I know there is a lot of people who are much worst off than I and guilt is a big thing with  me at   the moment (how many times can you agolise in one day)?

Could someone just tell me how I get my head around this please.

Kind regards Jenny

2

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

3

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.

 

4

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. 

5

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.

6

Hello MrO.  Thank you for your reply.  You really seem to know about this which must be a real big help to all these people that need advise.  MrsO, do you think that the doctors may have got this wrong and that I may have something else thats not so bad?  You see I dont alway have a lot of faith in doctors and being I do not have any positive result even with the RA they are going on x-rays of my hands perhaps one doctor has put me on a life time of medication and worry for just a guess?  I know that I have PMR has within three days on Pred 40mg apart from the temple all the pain I have had for months have melted away. Its just Could this really be Giant Cell and RA.

Perhaps I am in denial but I really feel I need confirmation before I can move on as I am having a really tuff time with this.

Thankyou,  it is nice to feel I am not alone.

Jenny

7

jenny

The temple pain is a classic sympton of GCA, and it should be subsiding on 40mgs.  Take a look at the website and read up on GCA.  The PMR pain will melt away with 40mg, if it was just PMR the dose is 15mg-20mg not 40mg - 60mg.  GCA is not to be messed around with at all.

8

Jenny, if the pain in your body improved miraculously within such a short time on the steroids, then that wull be taken as confirmation of PMR, in which case, with the temple pain you are experiencing, it is quite likely that you also have the linked condition, GCA. Whereas the 40mg has dealt with the PMR, it does sound as though you may need a higher dose to deal with the GCA.  I'm not a medic but your description of having "really bad deformed fingers" does sound indicative of RA.  I think you need to trust your GP on this one - if it were me I would get back to him as soon as possible especially about the temple pain.  If you experience any sudden problems with your vision, such as blurring or pain, then go straight to A&E.

9

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

 

10

Jan.  Thank you so much for your reply.  Sometimes just having other people tell you what they are going through seems to really help and make things seem real (if you can every really feel real again).  When I am alone (sad me)! all kind of things go through my head, my worst fear I suppose is going blind.  I have read over again what you have been through and my goodness you have gone through it. 

You sound strong and one day soon

when I get my head around this I will

be in a place to pick myself up and face it.

I really hate steriods but at the moment they are keeping me stable.  I have decided from what you have said to start taking the Mex on Tuesday night, I know I must but taking them sound silly, but is the last stage of accepting I am ill.

Jen thank you so much for your words they have really helped me. 

I hope you have good health in the future,

Take Care. Jenny X

11

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. 

 

12

MrsO, I followed your advise on monday and ran the Rheumy depet.  They told me to go straight to eye casuilty.  They tested by eye and said they were ok.  However in inflamation and pain with no pulse in my temple worried them.  I was given a drip of 500mg Prednisoline every day for three days (they were going to give 1000mg) I freaked out so they said they will try 500mg. All the pain is now gone and my eyesight hopefuly will be ok.  I think they thought a stroke was brewing in my head.  I need to go back again today for the last on, now the pain is gone do you think I need they last one.  One doctor said I must have this 500mg immediatly so I did then yesterday another eye specilatist said he would have only given me this if I was going blind.  What I believe MrsO? As I told explained before I cannot get my head around being diagoinsed with RA PMR GCA all in one go with no markers apart from a hand ex-ray.

Apart from steriod over-load I am going out of my mind.

Just one more question if thats ok.  After all these steriods what do you think I will be on steriod wise after this.. I was on 40mg.  No one will in eye casualty seems to know.

Thank you

Kind regards Jenny

13

Jenny, as to "what you believe", I think you must trust the doctors treating you on this one - if they couldn't find a pulse in your temple area and with the pain that you were experiencing, your eyesight could so easily have been at risk.  Their intervention has protected you, somewhat proved by the pain having gone away don't you think?  So be safe and continue the treatment today - don't forget that even though the pain has gone, it doesn't mean to say that the illness has gone - the inflammation is just being controlled (not cured) by the treatment.

As for what dose of steroid you will be on after this present few days of treatment, I'm not a medic but I would think your daily dose will either remain at 40mg or be increased to 60mg for a couple of weeks.  Hopefully you have an appointment with, are now going to be closely by, a good rheumatologist.  If not, you should be.

14

Jenny

MrsO has given you good advice, you must trust the medics this time around.

I would think that 40mg would be a starting point, with blood tests every two weeks  (CRP and ESR) whilst not set in stone, they are good markers for some people.   Your Rheumy and GP hopefully will be on the ball and keep a close eye on you.

The Methotextrate is gold standard treatment for RA and is also a steroid sparing agent, again you will be given a book and access to a special nurse to see you through the Metho, also you will be given Folic Acid with the Metho. 

You are in for a long haul, but there is light at the end of the tunnel and there is much to learn. Knowledge is power and when you get a handle on it all, you will manage this illness.   Your life style will be changed, but not destroyed.  Now is the time to treat yourself like a diamond and learn to say 'No'.   Do visit the website I posted for you and also see if there is an actually support group near you.

Keep in touch and with a bit of luck and a fair wind, the worst scenario has been dealt with and you have kept your eyesight.