PMR GCA and CLL

Hi snaggler, sorry you are feeling poorly and that you have all these worries.

It's perfectly possible for RA and PMR to run together and there are many people who have both. I've got GCA as well as PMR and I also have a joints problem which has been labelled as Polyarthritis for want of a better name.

Unfortunately you seem to have aquired the swollen Prednisone face (usually described as moon face) and they are also responsible for the redistribution of fat around the body. One of it's favourite places to appear is at the back of the neck; these, along with any other side effects, will diminish as the steroid dose goes lower.

In 10 years on steroids I have been up and down the dose scales too many times to count now. Highest was 40mg and lowest 2.5. Following a flare up of GCA in the spring this year, I am still trying to reduce the dose and I am currently on 15mg. As long as you are being well monitored - and it sounds as if you are - I would suggest you leave the worrying to the medics about the size of the dose. If it is helping you, then try to relax as that will help with everything. Just take it day by day for the present.

Do let us know how you are getting on.

Nefret

Hi Snaggler - and Happy Christmas a bit late! I do hope it was as good as possible for you.

Yes - you can have both RA and PMR at the same time and it is also possible for RA to be mis-diagnosed as PMR or for patients with what was apparently clearly PMR (responding rapidly to pred) to be later diagnosed as having developed RA. They are both autoimmune diseases. Anyone whose apparent PMR doesn't respond typically to pred (a relief of 70% or so in the symptoms within a period of a couple of weeks on a dose of 20mg pred is the criterion) needs to be worked up for other possible causes of the symptoms. RA typically doesn't have the muscular symptoms found with PMR - but patients who have a lot of joint pain do pose a problem in diagnosis and if you don't walk right as a result of the joint pain, then you can develop muscular pain which could be similar to PMR. However - if you still have \"PMR symptoms\" at the dose you are on at the moment - I would say it is definitely not PMR.

The apparent weight gain on your face and the back of your neck are the typical fat accumulations with high doses of steroids - moon face and buffalo hump are the usual flattering terms used to describe them. They usually go away as the dose falls.

The other side-effects of steroids are something that have to be balanced against the benefit of taking the steroids for the illnesses you have. Yes - taking very high doses of steroids for a very long time is associated with risks but your doctors must have weighed them up before deciding to continue them. The steroids themselves may be making walking difficult: one of the ladies on here has considerable problems with her legs because of steroids and even had to give up driving. You also must remember that you have CLL and that will complicate everything else.

What you are thinking about with your hips is probably the fact that high dose steroids can lead to osteoporosis and the most commonly known about thing associated with that is elderly ladies breaking their hips when they fall. It doesn't always happen though and takes a while - it is up to the doctors to keep an eye on that. You should have what is called a dexa scan to see what your bone density is like and if necessary there are drugs that help build bone tissue. You should already be on calcium and vitamin D supplements - steroids make your body excrete more calcium than usual so you need to put more in to start with and you need vit D to absorb calcium. The sore hips could be bursitis that isn't being controlled by the steroid dose you are on although the dose you are taking should be enough.

Is your doctor aware you are losing weight despite not looking like it? Have you told him everything you have told us? Has he done rheumatoid factor tests? They can be negative even if you do have RA - but there are also other arthritises and connective tissue diseases besides PMR which they might consider.

Don't know if this helps, all the best. I'm sure stopping work will help some with the symptoms.

Eileen

Thanks peoples. I think they will probably be doing more with the CLL as the number raise up. As far as the PMR goes, I get hip pain a lot and the x-rays did show arthritis swelling and bone damage so I am assuming I have RA too. I am sure the specialist will give me this diagnosis come January. Either way all this is pretty hard to deal with let alone trying to work. I am glad my doctors finally realize I cannot work and are willing to fill out the appropriate forms for the government disability. Everything is harder to do now. Even sleeping.

Snaggler

No need to re-iterate what has already been covered, but one thing, losing weight is one of the rarer side effects of Pred. Those of us who get the common one, weight gain, sometimes wish we get the rare one. Check it out with your medics, who should have the 82 side effect list.

The CLL is causing the weight loss and the weight fluctuates a great deal. Some days I can lose 15 pounds in a day only to see 7 of it back on the next. The swelling of CLL lympth nodes is pretty intense right now. The nodes in my lungs are swollen and it is hard to breath at times. The CLL seems to be causing me more trouble then the PMR and GCA. Although those in themselves are disabling. The prednisone is very helpful for both as I am sure it is helping the lympth glands to drain fluids. I am curious about the RA and will be glad to finally see my specialist this coming month. Once I see him I think my mind will be more at ease.