PMR or arthritis update again

[MiloCollie]

What do you make of this??

After increasing to 7mg for just over a week now and feeling better on it (apart from the day I forgot which I Rectified quickly). I phoned the rheumy nurses. Main reason being I’ve had no blood tests since July 22. She was sad about this cos my gp should have been inviting me so I need to get them taken asap.

she didn’t think increasing to 7mg was a good idea because although I think it’s working it could be working on my OA if that’s inflamed!! She said stay where I am and she’ll review my bloods. I don’t know where I am now!

[DorsetLady PMRGCAuk volunteer]

I found that 7mg did absolutely zilch for my osteoarthritis - whereas higher doses did mask the pain.... but sometimes it can be difficult to know what is causing what pain...

But as she has told you to stay at 7mg, I guess that's a bit of a bonus if you think it's working on your PMR...

however , if it is PMR an increase in dose may well give better inflammatory markers result. when you get the blood test.. so not quite sure what she is hoping to achieve.

[MiloCollie in reply to DorsetLady]

she said that and then I said it again. It would have been better to have bloods at 4mg but too late now. And my markers have never been that high. Anyway I’ve made an appointment for the bloods.

To be honest I don’t care what I take at the minute as long as I’m comfortable. I also need to be well for my big holiday on Feb 7th. I’ll keep on it til then.

I’m seeing my rheumy doctor at the end of March. The nurse said we have a few options if I can’t wait. Eg increase my methotrexate dose or add a hydroxyflu something. I’m changing NOTHING until after the holiday anyway.

[DorsetLady PMRGCAuk volunteer in reply to MiloCollie]

Agreed...with staying where you are (in Pred terms... not geographically that is 😊)

[MiloCollie in reply to DorsetLady]

sorry to moan on but like you said, sometimes you don’t know where the pain is coming from. If that’s the case how are we supposed to be treated?

[Rachmaninov2 in reply to MiloCollie]

Exactly what I’m thinking, having PMR, Inflammatory Arthritis and Spinal Stenosis among other conditions. My present medication is definitely not relieving the pain.

[DorsetLady PMRGCAuk volunteer in reply to MiloCollie]

I think when some get to lower doses and have both PMR and OA it is can difficult to know the origin of the pain. Simple answer really is to experiment with ordinary painkillers - or topical gels, if they help it's more likely to be OA...PMR doesn't react to them. So I would say if not sure, try that initially. If they don't work, then try an extra mg or two to see if it's PMR.

I had GCA only, so hips/knees weren't affected - so I knew knee pain was OA when still on Pred.

[moonieboy9358 in reply to DorsetLady]

Be careful with what topical gel you are using. Voltaren or diclofenac gels you can buy otc in the US. I am not sure about the UK. But both gels are NSAIDS. That can cause bleeding issues. I realize that they ate used topically. But your body does absorb the medication

[DorsetLady PMRGCAuk volunteer in reply to moonieboy9358]

Not sure if this was directed at me or MiloCollie, but yes I am aware… and usually say ‘use sparingly’ if suggesting topical gels…forgot this time so thanks for reminder.

I did use occasionally when I was still on Pred (and GP aware) at low doses, but not required any more since my badly affected arthritic joints have been replaced. .. one remaining arthritic shoulder reacts well to non drug Flexiseq at the moment.

[Broseley in reply to DorsetLady]

I was told to try using paracetamol by the rheumy nurse when I started getting morning stiffness in my hips on 6mg. However, as I said to her, how do I know whether its the pred that is working or the paracetamol?

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Well you trial the paracetamol for a few days without changing the Pred dose…if the pain eases with paracetamol then it’s probably not PMR…if it does lessen then you pain may be caused by something else- OA is just one option.,

[Broseley in reply to DorsetLady]

But the pain goes after I've taken my pred anyway...

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Fair enough…no need for paracetamol then🤔..did you advise nurse accordingly ? ..or wasn’t she really listening to you…

[Broseley in reply to DorsetLady]

No I don't think she was...

[PMRpro Ambassador in reply to MiloCollie]

Hydroxychloroquine???? I don;t get it - they are terrified of pred but will happily pile on methotrexate and hydroxychloroquine, neither of which are proven to work for PMR or at least only work for a very restricted population and both of which have some pretty hefty adverse effects! Someone was told HCQ has no side effects - no? It can send you blind and can do it suddenly after years on it with no problems!

[MiloCollie in reply to PMRpro]

nurse said they’re having fantastic results with hydroxychl alongside methotrexate. She did say you can’t have it for more than 5 years!! For goodness sake. I’ll do some reading up anyway first.

[PMRpro Ambassador in reply to MiloCollie]

Time they published then! Show me the figures ...

[MiloCollie in reply to PMRpro]

👍

[moonieboy9358 in reply to PMRpro]

Any drug or supplement can cause sure effects or death. One has to decide the risk to benefit ratio. Everyone is different along their journey. I was not able to function prior to steroids. I knew the possibilities of weight gain, hypertension , diabetes and other side effects. Yes I ended up with compression fractures and severe edema. Not every drug or treatment is right for everyone. Do research. Ask you doctor the risks to benefit. Then make your decision

[PMRpro Ambassador in reply to moonieboy9358]

Sorry - not clear why you addressed that to me!!!

[MiloCollie in reply to PMRpro]

whenever I ask a question there ends up lots of conversations between others. I have to pick out what’s for me. Although other peoples probs are interesting I always learn from them but sometimes they should start their own question.

[PMRpro Ambassador in reply to MiloCollie]

I know, it is a problem on the forum but you replied to me personally - and I probably know more than average about researching the right drug for me and often tell people how to do it so I wondered why you addressed me.

[DorsetLady PMRGCAuk volunteer in reply to MiloCollie]

PMRpro and I usually suggest that -if they are asking a specific question or stating something that need a wider audience.

But just commenting on their experience is a bit like a face 2 face conversation with friends - it does veer off in all directions.

If the original post is being replied to, and you are the poster the reply will just show who has answered it, It becomes confused when there is a reply to a reply! then you will see (for example) DorsetLady -in reply to MiloCollie - or whoever...

[PMRpro Ambassador]

Frankly, I don't care what is causing the pain - but if 7mg makes it better, that's fine by me!

[HeronNS]

I think it sounds more like PMR and this is why:

I have both osteoarthritis (fairly extensive and serious in places according to x-rays). For over a year before PMR diagnosis (2015) I thought my pain was the OA (first diagnosed about 25 years previously) getting worse. After taking 15 mg pred for a couple of days ALL my aches and pains were gone. Then in the middle of tapering I began to muddle the two conditions as OA pains began to recur around 7 mg, but I was pretty sure it was OA and successfully tapered pred to 2 mg where I was, or thereabouts, for several years. . Had a major PMR flare in early 2021, which I initially blamed on OA. But my CRP, which had never been really normal, was higher than it had ever been. A moderate pred increase (to 10 for three days than down to 7) dealt with all the pain, including a crippled shoulder which had become associated with a painful neck, just like pre-diagnosis hell. There is definitely an arthritic component with the neck, but most of pain must have been PMR. Two years later my pred dose is back down to 2 mg, last tests (June) CRP was lower than it had ever been - right down, in fact, and OA is relieved by the usual exercise to keep joints mobile and muscles strong, rest, keeping warm, and is not causing any particular extended pain, like un- or undertreated PMR does. My shoulder was great on the increased pred and my neck has behaved itself ever since then, although that dose had not been perfect for OA back in 2016. I really don't think that pred works at really low doses for OA, even though it may be all that's eventually needed for PMR. If my problem last year had been OA I would likely be in pain again as I taper to 1.5, I hope that hasn;t been too confusing.

I think when in doubt it makes sense to treat pain first as if it is PMR, and then investigate further if that treatment is ineffective.

[MiloCollie in reply to HeronNS]

that’s great thanks. At 7mg today it’s the first day in weeks that I’ve had very very little (scared to say none) pain in hips and lower back. I’ve not pushed it. Had an easy day.

[HeronNS in reply to MiloCollie]

Good sign.

[Suffererc]

feel in same position. Although I have bloods taken (another on Monday. They didn’t ask for a PMR test). I have to stay on 2 after asking to go higher for a week. I feel like a fraud with all this disbelief 🫢

[Dydee]

I too have a difficult time figuring out what to attribute my pain too but I have noticed as I taper, if my upper arms and thighs get a bit achy that I need to stop the taper. Those were my worst symptoms while I suffered for a year while docs tried to figure out what was wrong with me. Major upper arm, low back, hip and thigh pain and major weakness in arms. If my low back and hips give me fits now, I take Ibuprofen. If it helps I know it isn't PMR.