Lumbosacral plexopathy - Pain returning after steroid treatment

[Viklou]

So further to my previous post on this subject, and I can't find much else on HU about this particular problem, but here's where I am now.....I've just finished a 4-week course of Prednisolone to calm down the inflammation. It really helped to be honest by heck I've had the munchies, knackered but wired at the same time. Anyway on tapering off these and this last week only on 5mg, I'm once again struggling to stand for any length of time due to the pain returning. Don't get me wrong, I'm a lot better than where I was earlier this year, but I fear I'm just going to have to accept that this issue isn't going away any time soon. I just wish I knew why? What has caused this and will this be an issue for the rest of my life. I can't live on steroids as I'll be the size of a house if I carry on, besides the damage it will do to my bones.

While on the steroids I cut down the Gabapentin and came off the buprenorphine patches but I'm already starting to increase the Gabapentin to see if I can manage this way. I feel like I'm dammed if I do and dammed if I don't. Right now I'm just hoping it isn't anything sinister but tbh I don't care as long as I can get through September relatively mobile.

I'm not one for giving up and I've got a lot to do over the next 6 weeks or so. If anyone can offer advice it would be appreciated xxx

[PainConcernHelpline Moderator Community Champion Pain Concern]

Dear Viklou

We have a leaflet available via the online shop (Link below) about gabapentin and pregabalin, two drugs which are part of a group sometimes called gabapentinoids. The leaflet by pain specialist Dr John Lee will give you some background about gabapentin and pregabalin and help you to understand how to use them in the way that’s best for you. It can be downloaded or ordered as a paper copy.

painconcern.org.uk/product/...

I hope this will be of help to you

Regards

Pain Concern

[Viklou in reply to PainConcernHelpline]

Thanks, I'll take a look at this xxx

[PainConcernHelpline Moderator Community Champion Pain Concern in reply to Viklou]

Hi Viklou

If you access our website - painconcern.org.uk/ , and head to the information and resources pages, you will find links to our Airing Pain podcasts and Pain Matters quarterly magazine, within these there will be more information surrounding managing pain and medication.

Pain Concern

[1ChLoE]

Hi Viklou

I don’t know if it is your first time in tapering steroids, but when you get down to about 5 mgs your previous symptoms can seem to return. You may have to slow the tapering down. There is information on here telling you how to do slower tapering. Hope this helps

[Viklou in reply to 1ChLoE]

Yes tapered steroid before but may need to speak to GP and check

[1ChLoE in reply to Viklou]

I found when I tapered my steroids following consultants advice it was too quick for me. (I did the slow slow stop method I think that’s what it’s called) and managed much better.

[AhBabs]

Hi

I empathise I really do

I’ve been through the mill and after 7 plus years at the point I have to live with constant pain as I’ve exhausted all avenues

I have recently had the pleasure of a new GP who is trying a new round of medication

Gabapentin was helpful at the beginning though ask for Pregabalin it’s more expensive though more effective

I stopped taking it as I was taking sertraline Pregabalin and tramadol and turned into a zombie

I have since given them all up except the sertraline This was not easy as the side effects are abysmal though so worth it

Replaced by sefapam a new pain killer and duloxetine a nerve blocker with seratonine (excuse the spelling)

I must say I will always feel pain as nothing will cure it though my mind is clear I have a lot more energy to deal with it

Keep on at your gp or consultant for alternatives I hope you will also find what suits you on your journey

I found the transition from well to always unwell more of a trial .loosing mobility and freedom was the worst

Now I’m beginning to accept the situation and things do get better

Keep on keeping on

Kindest Regards

[cj75s]

hi Viklou

I’ve been on Gabapentin now for about 6yrs. On 2700mgs per day. I find it just takes the edge off my pain. I damaged my sciatic nerve at S1 L5 and my right side up to my neck and even down right arm. Nerve specialist did not want yo test my neck as too much in there that could be disturbed . So I am left with undiagnosed pain in my neck and right arm. As I said eatrlier the Gabapentin just keeps the edge off but I also take 200mgs of naproxen daily. This really does add an extra layer of pain control but it does nake me drowsy!

so just take the gabapentin and get it increased until you can nanage that pain It does work eventually. Can take up to 4 week’s initially then maybe 6 months until your at a managable level.

[Viklou in reply to cj75s]

I can't take naproxen because it plays havoc with my crohn's disease. I'm convinced the two are linked somehow but who knows