I am down to 10mgs Pred as i am still having pains on waking in upper arms joints in hands. Doctor has started a prog. With Gabapentin

[Lionking50]

Week 1 3x100gms every day.

Week 2 4x100gms

Week 3 5x100gms

Week 4 6x100gsm

At the moment after first week still no improvement, is anyone

Using Gabapentin with Pred.

Regards linking 50

[PMRpro Ambassador]

I've never heard of gabapentin being used for PMR pain, just for patients with neuropathies. Believe me - I've read a lot!

Sorry - I can't remember if I know your reduction regimen. How fast have you gone from 15mg to 10mg? That has a great role to play.

The other point is that some people NEVER achieve total freedom from pain. And of course - did you take it easy or did you suddenly do all the things you couldn't do whilst ill? That is a common cause of continuing pain. You have to do your part and not overdo it with your unhappy muscles which also can suffer with pred as well.

[Lionking50 in reply to PMRpro]

started in August with 25mgs now down to10mgs with 5mg tabs. But have not been tried with the lower doses by my gp, when I have taken an extra tablet I am okay but. It seems that gp wants to try these other tablets.

[polkadotcom]

I am taking Gabapentin alongside Pred but, as PMRpro says, it is for neuropathic pain. The regime he has given you is higher than I started with, will be interested to find out what his reasons are.

[Hidden]

Hi Lionking,

After 3 years I am on 7mg of pred for 2nd time and I think we are winning! The symptoms of PMR are mostly gone - stiffness, pain in muscles and awful lethargy are gone, but there are effects that I did not have previous to my illness - occassional tendonitis, mostly in left elbow, but the main concern is tingling and slight numbness in arms and hands - especially in the left area. These symptoms go when I begin to move the limbs and I do not have any pain to speak of. My muscles seem to be regaining their original power and my stamina is greatly improved considering that I was a virtual invalid when PMR was at it's worst. By the way, I reduce really slowly. Half a mg at a time every 3 weeks or so.

To some extent, I still have a fair amount of fatty tissue around my upper back, and I believe that my tendons and ligaments are weaker than before I became ill. This suggests to me that the damage left by pred is the cause of all the symptoms I now have.

I take ibuprofen to get me over the drops in pred ( a no-no according to many doctors) and it works.

Pred alters the shape and functioning power of many parts of our body and, therefore, there will be pressure on the nerves in certain areas. I believe in exercise and massage to help, but that is for me! An anti inflammitory diet helps too for me.

I guess we are all on our own when it comes to fighting PMR, but if anything I have said helps you at all then I'm so glad. Have just re- read your post - upping the dose knocks out the pain ----- then leave it to pred until you feel OK then reduce really slowly.

Best Wishes,

Pats.

[Whittlesey in reply to Hidden]

Hi Pats, I have read your posts and again thank you for your good information. Would offer you a little advice -- concerning the tingling and numbness. I had that in June, July this year. I then had problems breathing and went to the emergency room. A cat scan of my neck showed a dissecting cartoid artery. They then began to cat scan many of the "Major vessels" including vertebral arteries. I have two vertebral arteries dissecting, one has an aneuryism. I am being treated for stroke prevention. With the added aspirin and a beta blocker, the numbness and tingling have stopped. Due to the disease and the prednisone, many of us may be at risk for stroke. It's not a bad thing to have this looked into. I had no idea, I had these. The GCA can move to other "major vessels". It is treated as the temporal GCA, but they need to know it is there. My understanding is that it will decrease as the temporal arteritis, inflammation decreases.

Not trying to scare you, but prevention with this, can help. And you can continue what sounds like a really good recovery. again thanks for your advice and information.

all my best, Whittlesey

[Hidden in reply to Whittlesey]

HI Whittlesey

[Hidden in reply to Whittlesey]

Hi Whittlesey,

Thanks so much for your concern - I will certainly look into this. It's more worry, ofcourse, but I'll go first to the internet with my symptoms and if I find worrying similar symptoms then I will get my GP to investigate.

Thanks again for your advice.

Pats. x

[Hidden]

Hi Lionking50,

I tried Gabapentin with pred when the Dr's decided my jaw pain was " idiopathic facial pain " and not GCA. It didn't help the pain so I stopped taking them after 6 weeks.

Usually the first line treatment is amitriptyline, I don't know if you have ever taken that.

The current thinking now seems to be that chronic pain is a mixture of nociceptive and neuropathic pain which is why more patients are being prescribed drugs like Gabapentin in conjunction with other meds.

Amitriptyline has certainly helped the neuropathic type pain that was keeping me awake at night. These drugs come with side effects, but like any medication risk v benefit has to be weighed up.

Gabapentin takes a few weeks to become effective so I'm not surprised that you haven't noticed any benefit yet.

I hope you manage to get some relief soon.

Best Wishes

Keyes

[Lionking50 in reply to Hidden]

Thanks for all your replies yes I have tried amitriptylin did not work hence Gabapentin.

[PMRpro Ambassador in reply to Lionking50]

If neither amitriptyline nor gabapentin have an effect it suggests the GP is barking up the wrong tree.

Again, I'm still not clear about how you reduced - but if you have gone from 25mg in August to 10mg now in 5mg steps I'm not in the least surprised you have pain again. 5mg at a time is far too big a step - any reduction should be no more than 10% of your current dose so in your case you might have got away with 2.5mg at a time down to 20mg, after that 2mg at a time to 15mg and then 1mg at a time. It's a common mistake made by most doctors (some rheumys are a bit better) because GPs think that they can use pred the same way they do in other illnesses. You can't.

Pats rate of reduction is far more likely to work. My rate of reduction is even lower and slower - I take weeks to get from every day at one dose to every day at the next, and that is only 1mg. Previous attempts led to me getting stuck at about 10mg - now I'm down to 5.5mg and have had no problems. You need 1mg tablets - and if they are ordinary tablets a pill cutter is the icing on the cake as you can do 1/2mg steps easily. I can't cut the tablets I have so it is slightly more complex - like enteric coated tablets the coating must not be damaged.

The symptoms of steroid withdrawal due to too big steps are almost identical to PMR - and there are thoughts they are connected and that some people are more sensitive than others. By keeping the difference in old and new doses as small as possible you have a better chance of success. And then you don't need to mess about with other medications with their possible side-effects which don't work.

Sorry - I tried to reply last night and the site wouldn't let me in !

[Lionking50 in reply to PMRpro]

Thanks for your reply I am going to finish the four week trial with Gabapentin as I have got to contact my Gp. To discus what effect they have had

Regards Lion King.

[Lionking50 in reply to PMRpro]

Hello PMRpro I am posting this update with regard to the use of Gabapentin which my GP prescribed as i still had slight pain in my upper arms and wrist an fingers after reducing to 10mgs pred into my 3rd week of grad.use 500gms,pain greatly increased so have not used at all for a week now and things have settled back pre Gabapentin, so i am still unsure why GP. as tried both Ampitrytlin and Gabapentin. I am still not sure why GP does not increase my Pred dose in 1mgs stages to manage the sleight pains i have i have always used 5mgs tablets.

[38jf]

Yes I'm on gabapentin for a diagnosis of spinal stenosis. Now I have been diagnosed with PMR and only had my first 5 days on pred. So far I've more movement but still in pain. I'm 56 always have always been fit, walking, cycling and swimming. This illness is like a bolt out of the blue! The doctor wants me to stay on the gabapentin for a while yet.

[Whittlesey]

Hi Lionking 50, Yes, I am using gabapentin with methylprednisolone (medrol). I use it for migraines (which with GCA headaches, can be pretty bad) and for muscle spasms in my thigh. It's the only medication I can currently take for migraines without a reaction. It works pretty well and no problems with the prednisone. They both seem to work well together for the pain. I take between 100 to 300 mgs per day depending on the level of pain. If there is no pain, I don't take them. My understanding is that we can take up to 2400 mgs per day safely, but to me, that seems high. At the higher levels the neurontin can cause dizziness and extreme drowsiness. A woman in my Center for Independence, disability group has said that using neurontin for three years caused her suicidal thoughts. That is one of the warnings. It has not caused that in me. And I know others that are taking neurontin without this effect (they are not taking medrol however). It does seem to be one of the better medicines for pain. My neurologist also has recommended the herb, Butter Burr, which I have also taken. It works fairly quickly for a migraine and I found it to have almost the effect of a valium. When I take the Butter Burr, I don't take the neurontin. unless the pain remains. I wish you well and better health. all my best, Whittlesey NYC U.S.

[polkadotcom in reply to Whittlesey]

Please be careful with any herbal remedies. Butterbur is contra-indicated in those with asthma and other chest conditions.

[38jf]

Yes but I'm now on a reducing dose of gabapentin as they do not help me with pain relief.