Pain Pain Pain

[rockcats4]

I have Polymyalgia and I am on warfarin and a small amount of aspirin. I have been to a specialist and have had a year on decreasing prednisone. Can anyone suggest a painkiller? The prednisone has finished but alas I'm still in pain.

[HollyHeski Administrator]

Hi, I'm so sorry your in so much pain, other than paracetamol, we are limited to what we can take, as many over the counter pain killers contain aspirin, which is a no no when already on anticoagerants.Please talk to your specialist or your GP, as there are prescription pain killers that you can try. Sometimes the key is to take regular and before the pain gets too much.

[Ray46 in reply to HollyHeski]

Aspirin is already mentioned as being taken, Ibuprofen is very common but contra-indicated as well. I think we are pretty much left with the opiates (Codeine and upwards...), which bring their own problems, and some of the more off-beat ones like Gabapentin (which is in a group of it's own and apparently doesn't react with Warfarin). Nothing is going to be over-the-counter though, except maybe codeine in some places.

[MaryF Administrator]

Hi, have you see your specialist or GP of late? It would be a good idea to ask them to look at your levels of B12, D Folate, Ferritin and Thyroid to rule that out, and make sure nothing is adding to what is going on, also to ask them about what you could take to help with this. I find the gel very good for extreme pain, however I am not on Warfarin, but if I was I would ring the GP to ask first. When I have either a very sore back or joints I use Better You Magnesium Sleep Lotion, obviously applied at night, to affected areas, I find it really helps. MaryF

[rockcats4 in reply to MaryF]

I was at GP and specialist but it seems to me both are a tad unsure. I’ve been given scripts for Panadol/codeine and tramadol and it’s suggested I mix them up. I’m wondering if anyone is on a painkiller (script) that’s simple and effective. I am on warfarin and aspirin

[WendyWoo50]

I’m so sorry to read ur in so much pain. People talk of flares but my life seems to be one massive flare. I’m interested to hear what is said to you. I take Dihydrocodine continuous (every 12 hours) 120mg for disc problems. Not sure if it helps the other pain or not. Due to my having along QT (an electrical heart condition) I can’t take gaberpentin etc but others say it helps them. Good luck I hope u find answers, keep us updated. 💋 x

[WendyWoo50]

Have you been to a pain clinic? They offer all sorts of things and you see a pain management specialist. They are running it over the phone at the moment so it’s still happening! They should know what meds etc are available to you. Ask ur GP to refer you ASAP. If you haven’t been already. 💋 x

[KellyInTexas Administrator]

Are you saying that you have PMR? What is your CRP?

Is it possible you have decreased your pred too quickly?

There is a wonderful HU website administered by women who will take wonderful care of you.

It is PMRGCAuk

A woman by the name of PMRpro ( moderator/ admin?) actually has lupus herself, but not APS. She is however familiar with warfarin.

They will link you to wonderful papers, and strategies to tapers. ( mainly don’t taper too soon, and most doctors are a little too quick to taper.)

One year, from what I read on that forum, is quite too soon to be off of pred. Two years to five years is quite normal range. ( They are truly experts so they will fill you in all about it. )

I joined the site as their stray kitten to learn about pred as I was on pred to help with vasculitis and poly arthropathy.

What these wonderful women taught me was : set an alarm at about 4:00 am and take the pred then. Get ahead of the cytokines causing the inflammation. ( cytokines release in the early morning hours.)

Keep a little joghurt in a small thermos beside your bed with a spoon- eat it when the alarm goes off without ever getting out of be... drink some water and take the pred with it- rayos brand if you can get it because it’s enteric coated. This will help prevent the pred upsetting the tummy.

Tell her I sent you to her and the site .

There is one other woman on there with APS. “Monkeymate” I think her name is.

Good luck and I will see you on there from time to time as I need help too.