Pain....

[Ida-June128]

It seems that for once I actually had an appointment that worked for me. I had my 4 monthly check up with my rheumy and whilst he was pretty unimpressed that I had gone up to 15mg pred daily from 7.5 last time I was there ( I was at the start of a nasty flare up which meant I could not support my busted femurs on the crutches without increasing and in spite of him increasing the Azathioprine to 150 daily could still not cope) he did step up when I showed him my knee that has been the size of Jack Russell for the past week combined with a thigh that one of the All Blacks would have been proud of.

Thankfully, he thinks that the knee is just wear and tear and drew off a syringe of fluid which proved there is no infection - I was worried that the screws at the knee which hold the rod on place in my femur had moved meaning I would not have been able to swerve surgery any longer - and put a steroid injection into the knee which has worked wonders.

Worryingly, he wants me to start taking Gabapentin which he tells me will work on different receptors in the brain from the pred and the Tramadol and Paracetamol that I take 5 hourly (max dose daily I'm afraid). He promised me that the drugs will all work together safely but wants to use the Gabapentin in an attempt to reduce the pred......he will try almost anything to cut down the pred. I asked if it would turn me into a zombie and he said it wouldn't but consulting Dr Google today apart from weight gain ( joy!) it seems to produce feeling of euphoria and relaxation which I am not sure is the way forward for me.

Can anyone give me some advice on this drug please? I agree that I need to cut down on the pred but daily quality of life has to take prioroty.

[piglette]

I do not understand why he thinks Gabapentin should help reduce pred or help the PMR if it comes to that. Was he giving it you for something else do you think? If you have got down to 7.5mg in the past you can probably do it again when you are more stable. Has he mentioned Methotrexate for helping reduce pred? That seems the popular path with rheumies, not that everyone agrees that it does help in the reduction, although some do.

[Ida-June128 in reply to piglette]

We tried the Methotrexate last year and the symptoms when taking it were just as if all the pred and painkillers had been withdrawn. We tried a break and a lower dose and then scrapped it and tried the Azathioprine which I have had no adverse reactions to and I think it helped me to get down to 7.5 4 months ago when I had the flare up. Next time I go down I will stop at 8mg. He is quite definite that the Gabapentin is to enable me to reduce the pred for the PMR, nothing else.

[Celtic PMRGCAuk volunteer in reply to Ida-June128]

Like piglette, I don't understand where he is coming from in thinking that Gabapentin will allow you to reduce your steroid dose! All that I know about Gabapentin is that when I attended a pain management course a few years ago, one of the course leaders was desperately trying to get all those who were on Gabapentin for pain relief to reduce their dose - I got the impression that the view was that they had all become over-reliant on it. You are very lucky to be able to tolerate Tramadol - one dose of that practically knocked me out and I never took another.

[piglette in reply to Ida-June128]

Are you still taking Azathioprine? Why can't you carry on with that if it helped before?

[Ida-June128 in reply to piglette]

We increased the Azathioprine four months ago at the beginning of the flare and it seemingly made no difference. I was been told by him a couple of years ago that I have fibromyalgia as well but all my symptoms seem to be classic PMR. I am lucky with the Tramadol though, so very few people seem to be able to take it. The more I have read about gabapentin today the more I am cautious of it. I asked my favorite pharmacist, who is truly wonderfu,l and he thinks I will go 'cuckoo' with it and that the gabapentin combined with the fatigue of the PMR will cause me to doze off all the time. I understand that they sneak it in to the system with a tiny dose and then increase it quite quickly......I suppose I can discuss it with my GP when the letter get there from the hospital which at least will give me a couple of weeks respite. I saw a friend today who said it was too strong for her and she found herself in hospital talking to a pot plant. I am also worried that although the Tramadol keeps me going with the legs (and the PMR) it I take anything stronger it may block out the pain from the femurs which could cause me to get a bit 'gung ho' with them and end up having an emergency re-build which is not my master plan.

Thanks everyone for replying so quickly, I rely on you all so much.

[piglette in reply to Ida-June128]

Do you think the Tramadol is actually helping the fybromyalgia rather than the PMR? Tramadol did nothing for me. I would love to know why the consultant is suggesting Gabapentin as a steroid sparer.

[Ida-June128 in reply to piglette]

I had been taking 50mg of Tramadol 12 hourly since the nineties for a botched spinal fusion in the late 70's for spondyliosthesis when all the other medication stopped working. Tramadol works well for me and as long as I stick to the limit of only one glass of wine I am fine on it. When the PMR hit my GP suggested I go up to the max dose - 100mg x 4 daily backed up with the same quantity of Paracetamol. This at least got me off the tens machine. Apart from the time in hospital when I was full of morphine after the first femur broke and they were pinning it and a very short ( 2 weeks) on morphine patches - suggested by my GP - they sent me away with the fairies - I have had no extra pain relief for the femurs. As I rely on crutches to get around and the main areas for the PMR have always been the shoulders, upper arms and thighs it is sometimes hard to decide what is PMR pain and what is muscle pain from being self supporting - until there is a real flare up when there is no question but that it is the PMR.

[piglette in reply to Ida-June128]

It must be awful having to use crutches with PMR. I can understand using Tramadol for your other problems.

[PMRpro Ambassador in reply to Ida-June128]

Well - I don't know anyone it has helped for! It sometimes works for people who have fibromyalgia as well as PMR (which isn't so uncommon) but the ones I know have said they are different pains and while gabapentin helped the fibro in some cases it definitely didn't help the PMR.

I also know a few people who felt the mtx or aza helped reduce the pred dose for a time but then they had massive flares - so did the "steroid sparers" simply coincide with a period when the autoimmune problem was relatively quiescent?

runrig, on the other hand, did show the aza was definitely helping her manage on a lower dose of pred as everything came back when she had to stop it for some reason.

[Runrig01]

Hi PMRPRO is correct, I stopped Aza last Xmas as I had started creeping up my dose of Pred having got down to 3mgs . The Rheumy nurse felt it wasn't working and said methotrexate would be better, but Rheumy refused to change. I foolishly suggested we stop over the festive season if it's not doing anything. 12 days later had a very bad flare of the GCA symptoms (undiagnosed at that time as Rheumy always disputed it was GCA). Restarted then head pains started to subside again. I have always felt it helps the GCA symptoms but not the pmr. I was also given gabapentin to help with head pains by my GP whilst I waited to see two of the countries top specialists. I found the first few days it made me a little sleepy, but after that I was fine. I even took them whilst working on my busy ward. I took 300mgs 3 times a day. Prof Dasgupta changed me to the sister tablet which he said was better, Pregabalin, and it's only 2 times a day. I found this better at helping with my head pains and scalp sensitivity. Both the gabapentin and Pregabalin put weight on. In 27 months on steroids I gained 18 lbs. since being on gabapentin or Pregabalin I have gained another 18lbs over a 6 month period,

Sorry for the long post but hope it helps, but neither of the tablets made me cuckoo 😁. Just keep the first few days on them quiet and relaxing then you should hopefully be fine. They also cause dry mouth to add to your problems. Take care xx

[Rosiemaye]

Hi,

I am not yet diagnosed with PMRGCA but have several other autoimmunes. I cannot comment regarding the steroids but take Tramadol and Gabapentin. I took Gabapentin up to 300mg x 8 a day but it didn't really help with any pain so reduced it gradually back down. I always take one at night as it works well to help me sleep ( restless legs). It never made me feel zombie like but we all react differently. I currently take 250mg a day of Tramadol with no side effects but cannot take anything like Morphine or Pethidine without violent sickness.

I just remembered that my main problem with Gabapentin was fluid retention rather than weight gain.

So although I have no idea if your dr is going in the right direction but it is useful to see various peoples reactions.

[librian60]

Hi..i damaged a nerve in my neck 6 years ago and have had nerve blocks and radio frequency but they didnt help..i be in constant buzzing pain and i thank god my doc tried me on gabapentine after trying many others..it doesnt take pain away completely.but has lessened it a bit..it hasnt turned me into zombie. .ha i think..as with all medications,they have to be trued out..i was put on lyrica once and they made me sit an stare out window in a haze..just different tablets work for different people.