Not well at all friends......

[Jeanabelle60]

For the last few months I have been weened off Prednisolone by my Rheumy nurse. I'm going on Gold injections in September. When I got to August I was only taking 1mg per day. I have noticed a lot more pain in my knees, hands, shoulders and neck. Then on Friday morning I know before I even tried to get out of the bed that I wasn't going to be able to do it.

My entire body seemed to have seized completely. I was in so much pain, everywhere from my eyes (Sjoegens Syndrome) to my toes and every muscle, tendon and synue (spelling?) inbetween. I have only had this happen about two times before and that was when I was off all meds to get me on to Bio's. My disease has next to nothing controlling it until August 23 when I will get a steroid injection to see me through a very much needed holiday. Until then I'll have to make do with 500mg of Gabapentin 5 times a day. 'They'll do nothing to help you Jean' says my darlin Rheumy nurse Bronagh, 'your disease is out of control'......I sort of guessed that for myself. They are doing nothing that's for certain. Anyone else have an opinion on Gabapentin? They seem to be the drug of choice these days. My brother in the US got them for severe back pain.......did nothing for him either.

While the muscle and tendon pain has decreased, but not gone away, I'm still unable to drive, even with my wrist splints on, just haven't the strength in me. Lifting a mug of coffee requires two hand at the moment.

While I know there is nothing to be done until the 23rd I just wanted to moan. I've tried to tell the dogs about my painful predicament but they aren't interested. Poor things haven't been out since last Thursday. TBH I intentionally left the side gate open this afternoon so they could get out and have a good run to themselves, poor babies. My next door neighbour 'kept an eye' which was good craic as the poor woman has Macular Degeneration.......you have to laugh. As far as she she could be certain they didn't 'leave a deposit'in anyone's garden.

So the sofa, the odd walk around my small garden and the bed is going to be me until the 23rd.......I may just content myself. Thanks for listening. J

[orchidcass]

Oh bless you Hun I understand that all consuming pain. When it's that bad you really can't think of anything but the pain. Gabapentin is just a zombie drug like amitriptyline. Meant to switch off everything not just the pain and in my opinion doesn't do that too well either. If I was in your boat I'd ask to go back up 1mg Prednisone and then gradually drop it by having the pill then quarter it. Seems ridiculous but really can make the difference, our ra just doesn't like survival without Prednisone, in my experience even on triple therapy I still struggled without Prednisone x

[Jeanabelle60 in reply to orchidcass]

Thanks for the reply......it takes me away from reading the NYT's article about why Donald can't/won't stick to the tellipromter! This is what I'm reduced to......think I'll head back to the bed and listen to Classic FM to sooth my poor body in beautiful music......I couldn't care less about Donald's problems I've a few of my own at present.

I have a few Prednisolone here in the house. You've made me think about upping them a bit to see if they help......I'd try almost anything at the minute. I'm in the same dressing gown since Thursday past......afraid to take a shower for fear of falling, I live on my own you see...the list goes on.....it will be a week tomorrow that I get my injection.....should I just carry on? God I'm so sick of this disease. There now I'm going to cry I'm feeling so sorry for myself and angry tat the same time......only problem is I haven't the strength for either. Thanks and for taking the time to reply......J

[Pinkbungelowgirl in reply to Jeanabelle60]

Hello there. I'm so sorry you are feeling so poorly.

I don't think it would be unreasonable to ask your G.P for a house call and I am sure he would increase your Prednisolne so you can manage at home. A low maintaince dose of 5mg is not uncommon to help suppress the inflammation. He/she will get in touch with your Rheumatology dept., and liaise with them to find a way to bridge the gap to nearer your holiday and the agreed treatment plan.

You could phone the practice today and ask your G.P to phone you back so you can explain where you are at the moment ( am taking it that you are in the U.K).

Nobody should have to suffer like this. I am sure your G.P will agree you need help.

Have plenty to drink and sleep whenever you can. Am thinking about you.

Wishing you well very soon.x

[Simonwood in reply to orchidcass]

Can you get Prednisone over the counter?? I have RA and take Humira shots but when I have an episode or flare up there's NOTHING that helps! And it's usually hits in my groin area therefore I cant walk!

[orchidcass in reply to Simonwood]

No I don't believe so. Many RA patients can get a "rescue pack" of Prednisone so you always have some for such moments x

[Suereeves in reply to Simonwood]

I think they're just on prescription here, but you can buy predisilone for next to nothing from any pharmacy in Spain.

[Aureliabert in reply to Simonwood]

Groin area this is new are you sure is not somethings also?

[rawillbebeaten]

Really feel for you, it sounds awful. I would think going back up on prednisolone would be a short term answer? I've had nerve pain in my feet since Feb and Gabapentin has really helped with that and I can sleep at night, over 4 months of not was tough. I also take Amitriptyline for headaches but have cut that back to 10mg as they do similar things and may stop altogether.

Thinking of you and your dogs. My 14 year old Labrador was moving quicker than me when the pain was bad. I was thankful that he doesn't need much exercise these days, although I still wish he was as he was a few years ago not getting older and slower.

Hope things improve soon and the Gold Injections work

Michele

[Kariss in reply to rawillbebeaten]

Your reply made me remember my old Labrador- he made it to thirteen and he was born with hip dysplasia and was very arthritic. He had ankylosing spondylitis in his spine as well and was also epileptic. Amongst other things, he was on gabapentin and it seemed to help him a lot. We used to struggle around our village together and I was never sure which of us was slower! He's been gone five years now and I still miss him but am reluctant to have another dog as I don't feel I'd be able to give it proper exercise. I've still got three cats though and they keep me busy enough....the little boy one seems to be more like a little dog anyway the way he carries on!

[rawillbebeaten in reply to Kariss]

Hi Kariss,

Your Labrador went though a lot and making it to 13 sounds amazing. I'm dreading the final passing of Dell-Boy, Dell is on medication for arthritis as well, but still enjoys walks, slow and short and life in general. I started him on Glucosamine supplements when he was about 8 and they improved his joints, so I take a human version now. I'm not sure about having another one but may do volunteer dog walking, hopefully won't have to think about it for another year, if we're lucky. Our two cats are great too and Charlie always wants to follow us on walks but only comes so far.

Michele x

[Kariss in reply to rawillbebeaten]

My old boy had glucosamine tablets as well - being a lab I just used to throw them in with his food and down they went! He did well on them but when I tried dosing myself they didn't seem to help me. I think some things just work for some and not for others - I'm onto the fish oil type now instead. I haven't totally ruled out having another dog, I'm waiting for my husband to retire before I decide because he will need something else to do and hopefully he can do the walking bit (my RA is mostly in my feet), we shall see. Your dog sounds amazing for his age. I hope he goes on a long time for you.

Best wishes, K

(Sorry for hi- jacking your post Jeanabelle60!)

[linda-5502]

You poor darling you have my sympathy sending you hugs as all say get the draw to come sometimes your local citizens advice have a list of volunteers who dog walk. Take care xxx

[Lomo1964]

You poor thing you. I really hope you get sorted out so you feel better and can walk your fur babies again. Lots of hugs xx

[Aureliabert]

I use Gabapentin and a help me a lot,

Not perfect, but helps my nerves and my attitude ( when I am in pain I get very nervous) my Dottor told me that gabapentin is suppose to ill our nerves

When they under inflammation , the side efect are confusion

[Amy_Lee]

Oh dear!! You reminded me those months when I was at my peak of suffering. I basically collapsed and could not sleep at night. It was so painful and it just woke me up. It took me hours to just get out of bed. I could not change my own clothes and I could not put on my shoes.

You need to talk to your rheumatologist to get help on this. I really feel for you but just could not do much to help you over there.

Take good care and do get help from just anyone around you.