Needing your help yet again!

[lynabelle]

I am at a loss of what to do next, about 2 weeks ago I had a stomach bug which lasted

for over a week, since then I have had my left side neck pain return, I can hardly walk as the pain in my back has worsened and I am tired all the time , I constantly shake , have jaw pain , across my shoulders and down my arms ache , I have pins and needles in the left side of my back,went to the doctors last week nearly fainted getting there and had to get a taxi back

My doctor said that I was bound to feel weak after the stomach bug and that the pins and needles in my back where probably due to rheumatoid arthritis as the rhematologist has now put me on methotrexate and that may affect the muscles and nerves, she said my esr was at 24 so no need to up the steroids , but to be honest I have no quality of life I am back to square one , I am on 10mg of pred and have been for about a month , I am due to go down to 9mg but I won't until I feel better.

Do I go back up on the steroids ?

[trish29]

OH Lynabelle. I really feel for you and I wish you better . I know what its like as the pain in my back/spine is stopping me from walking and I am in tears most of the time. This got worse when I got down to 13.05 mg prednisolone. I spend most of my day trying to do everyday tasks but like you I am so tired all the time. and I see my Rheumy on Weds and I'm scared where I go from here. I have followed your story Lynabelle and you have been through so much and are one Brave Lady. I think you are wise not to reduce anymore. Has your Doctor not suggested going back up on the steroids? My GP has sent me back to my Rheumy as he doesn't know what to do as my painkillers don't get to my pain at all. We must keep going ..Thinking of you. Trish 29

[lynabelle]

Trish thanks for replying , I don't think I am brave but I am getting very frustrated by these medical people who are supposed to be there to help us and don't seem to care half the time, I have come to the conclusion that if it is an auto immune disease they do not have a clue , I have no quality of life and it sounds like you too are the same , I feel that perhaps I should contact a daytime tv show or something to highlight how many people are suffering and no one seems to care.

Yet another day in my pjs not able to get out and not even able to get dressed , managed to have a bath yesterday and wash my hair, that buggered me up for the day !!!! Hang in there trish at least we have each other to sound off to x x

[trish29]

Hi Lynabelle. It's Trish again. I have just re-read your post and I see that your GP didn't up your steroids because of your ESR levels but my new Rheumy doesn't take any notice of this as he says it's down to your symptoms and how you are feeling in yourself so keep on to your GP until he/she listens. I hate going out now as I don't know if energy levels will allow and sometimes I feel strange and as if I'm not in control of my own mind and body, but I put that down to the medication.. Are you on a strong painkiller . I take solpadol 500mg but it's not enough. I hope you are better tomorrow. trish29

[lynabelle]

I was told not to take any painkillers as they would probably not do much good , I take methotrexate once a week as the rhemy said this was like scaffolding for coming down off the steroids , has made no difference at all I fact I feel worse, I said to my doctor I am sixty in 2weeks time and I feel more like 80 .

[trish29 in reply to lynabelle]

Hi again lynabelle. What you say about Methotrexate gives me food for thought as I was on it for a long time a few years ago but had to come off it . My new Rheumatologist has suggested I might be put back on it in injection form .Keep in touch and surely by now there must be someone out there who will listen.. I don't enjoy medical visits and you sound the same. I hope everyday when I wake up that I can be my normal self and get up and get on but by the time I've showered and had breakfast I am exhausted. I'm only a post away and I will let you know if my Rheumy has any tricks up his sleeve. trish29

[lynabelle]

Good luck trish and hope to hear from you soon

[trish29 in reply to lynabelle]

Hello lynabelle how are you? I hope you are feeling better. I have just got home from seeing my Rheumatologist and he was very kind and listened to all I had to say. He feels that we must give my painful spine some urgency so he has ordered an MRI scan for me and suggests stronger Butran Patches 10mg to go with my 500mg Solpadol painkillers. He is not putting any pressure on to reduce the prednisolone for now. He has also put me on Amitriptyline10mg at night. So we will see . I will probably be high as a kite in cuckoo land for a while ,but it would be nice to get rid of some of this pain . Thinking of you.xx. trish29

[pennyw Administrator PMRGCAuk team member]

Goodness Lynabelle what a terrible time you are having. I hope you can make it to the NorthKent meeting on 12 November as Dr Campbell, my rheumatologist, will be there and he is very interested in PMR and GCA. I am sure he will at least try to answer some of your questions or advise you on what else you might try.

I have mentioned before that I have cut out many foods on my anti-inflammatory diet - wheat, dairy, alcohol and bella donna veg.

If you feel you can't go without all I am avoiding how about cutting out the bella donna ones to see if there is a slight improvement - that means no tomatoes, aubergines, peppers or potatoes? Every time I have tried a small amount of tomato since I started on the diet it has had an immediate bad effect on me so I would far rather go without!

All the best and let us know how you get on.

Penny

[Dorene]

Hello lynabelle

I am so sorry to hear how poorly you are. I think your problem could be methotrexate, it made me feel tired and ill, I had to stop taking it before I had come off Prednisolone. I was diagnosed with PMR/GCA three years ago, Temporal arteritis confirmed by biopsy, my esr readings have never been particularly high. My GP and my Rheumatologist say the symptoms are important. Sometimes we need to take a low dose of Preds for the rest of our lives and if this keeps us pain free it could be worth it. Could luck. Dorene

[PMRpro Ambassador]

"if it is an auto immune disease they do not have a clue" - unfortunately in very many cases that is the bottom line. Autoimmune disease isn't something you can can easily give a label to - what we see isn't the disease itself but the symptoms due to the underlying autoimmune disorder that is making your body's immune system attack itself. In one person it may be the joints, in another the skin, in another an organ such as kidneys or pancreas. The name given to what you have depends on the set of bits that are being damaged. And that is why there is no "cure" as such. Different versions need different answers and in most cases the best that can be done is use something that controls the symptoms and allows a reasonable quality of life. In PMR that is usually pred - if you have "simple PMR" 15 to 20mg of pred will have a miraculous effect and then you can start to find the lowest dose that will control the symptoms. If, on the other hand, you have something else going on as well - the pain relief will be less and how ever much pred you take it won't help.

One other point - if I had an ESR of 24 it would be something like 8 times my normal. Just because it is within the "normal range" doesn't mean it is normal for you. The normal range is the levels that are found commonly in healthy individuals - yes 90% of the population have a level under 35. But some of them have a normal level of 4 like me - it is still under 35!

[Whittlesey]

Hi Lynnabelle, I have GCA diagnosed, May 2012. In July, this year, I was hospitalized, couldn't breathe, fatigue, terrible neck pain, dizziness. They did a Cat Scan of the vessels in my neck. I had a dissection in my cartoid artery. The GCA had moved into that artery. Was treated with aspirin and increased prednisone. Am seeing a thoracic surgeon. The artery apparently will repair by itself, but they are trying to keep the inflammation down, so it can do this. Further scans showed dissections in two veterbral arteries. GCA can spread to the major arteries.

So possibly a Cat Scan of your neck and vessels may help with the neck pain.

Try and hang in there. It is difficult.

all my best, Whittlesey