Pain management

[Purplegirl70]

Am in a lot of joint pain and need advice on the best painkillers to take alongside 15mg pred

[PMRpro Ambassador]

You should not use NSAIDs alongside pred - which leaves paracetamol and co-codaol (is that still available). My doctors here in Italy won't let me use anything!!!!

But if you have joint pain - you should really ask your doctor because joint pain is not usually a big thing in PMR and if it is the PMR it probably means you need more pred rather than painkillers. In PMR, pred is the painkiller.

[SheffieldJane]

Hi Purple girl. It seems to me that 15 mgs is not relieving your symptoms in the way one might expect. Perhaps your doctors would let you try a higher dose, say 20 mgs to see if that gets on top of the inflammation and pain. PMR needs to be zapped in the early days and some people seem to require an initial higher dose, anything up to 30, then tapering down to a lower dose when you are comfortable. Conventional painkillers don't seem to help PMR much, people have found heat beneficial - I cuddle a hot water bottle.

[PMRpro Ambassador]

However - I have realised I had forgotten one aspect - for some people pred causes the side effect of joint pain. It is usually at higher doses than you are at but everyone is different.

Did the pred relieve the pain well at first? Have you reduced from your starting dose? When did the joint pain start?

[Purplegirl70 in reply to PMRpro]

To be honest, am starting to wonder if I have been correctly diagnosed.

[daworm in reply to Purplegirl70]

And on that your not alone! Me too..

[daworm in reply to Purplegirl70]

I would love to have a Dr or Rheumy or who ever to say bluntly to my face, "you have PMR and nothing else, no hidden cancers, RA, or anything else"..then I would be fine...then this I will battle and know on bad days its only a flare...that, "in the back of my mind" thing causes me to obsess and search the internet....on good days I don't even think about PMR much..

the only way to get that sort of diagnosis for me would be to go to someplace like Mayo's or Cleveland Clinic or U of M...one of the world renowned medical centers...perhaps I may one day if anything gets worse..but so far I have plenty of functional good days so I'm not there yet...but this morning if someone were to say "lets go, I got you an appointment" I would jump in the car...not a great day...weather change I think...plus standing out in the cold for two hours handing out candy..Trick or treat...

[HeronNS]

I believe you said in your first post that you were 47. I wonder if you are right about possible misdiagnosis? Good response to a moderate dose of pred is one of the the things used to diagnose PMR and you don't seem to have had that. What tests has your doctor run, in case it really is one of the other kinds of arthritis, for example? PMR is diagnosed by excluding as many other things as they can.

emedicine.medscape.com/arti...

[Purplegirl70 in reply to HeronNS]

The diagnosis followed a full blood test after months of me saying my thigh muscles were getting weaker and weaker making climbing stairs and walking short distances almost impossible.

[HeronNS in reply to Purplegirl70]

You certainly had the right symptoms. Were you going to see about an increase in dosage? it does seem to depend a little bit on body size and/or rate of metabolism so some people definitely need more than others.

[Purplegirl70 in reply to HeronNS]

I have a phone appointment with my Dr on Thursday

[suzy1959]

I have PMR and Osteoarthritis in both knees and a hip. The only way I can try to differentiate the pain is if it is bi-lateral (PMR)or uni-lateral (OA). I had a really painful thigh for a long time before the hip started to hurt but I now know that the thigh pain was Hip OA and not PMR or side effects of PMR or Pred. I can still get confused as to which pain is which, but the OA is what limits my mobility massively, not the PMR.

[Purplegirl70]

There is a family history of osteoarthritis on my mother's side which I'm not sure if I have mentioned to the Dr so thank you for posting as this has reminded me to mention it to the Dr tomorrow.

[Amkoffee]

It is possible that you also have rheumatoid arthritis. I myself am experiencing that right now. After about 2 weeks of joint pain which was totally different than my PMR pain my rheumatologist did an MRI on my right hand which was the worst part hurting. And it turns out they saw inflammatory arthritis. She mentioned taking me off Prednisone to see if I can handle that. But I think I have both PMR and rheumatoid arthritis. It actually is quite common for someone who has PMR to also get rheumatoid arthritis. In any event you should bring this up to your rheumatologist. There are blood tests that can be taken to see if you have RA. I took the blood test several months ago and it came back negative. It wasn't until I had the MRI done on my hand that it was found.

[Longtimer in reply to Amkoffee]

That's interesting because my sister has RA and she tested zero negative, but so did I .......this made my arrogant rheumie say no to me having it, yet I have all the same symptoms as her. I am having to lower pred from 11mg to 5mg....(at 1mg per month) before he will decide what he thinks I have, saying after 6 years on pred I don't have PMR......I am in terrific pain, and feel very low, now going to try Amiltriptiline to see if will help, fingers crossed, no, that's too painful!😢

[daworm in reply to Longtimer]

"arrogant rheumie"....time to look for another more responsive rheumie...take charge, somethings going on for sure...

[Amkoffee in reply to Longtimer]

If given an option I think it's time for you to find a new rheumatologist. And if you live in the US check out the doctor on a website called healthgrade before you go. I use it all the time because I got burned once when I read bad reviews on a doctor and went to her anyway. She and I ended up bumping heads and she basically fired me. And it didn't matter to me because I was leaving her anyway.

[daworm]

Norco, Vicodin, whatever you want to call it, they help me...I also started a daily quality fish oil...but if I'm really hurting, a pain pill, a little xanax maybe, not often but once in a while a muscle relaxer like skelaxin....all prescribed by my dr....with this PMR going on why would I be worried about addiction to pain meds...being reliant or dependent isn't the same as addicted...I'm not going out and looking for black tar heroin...what ever helps me make it through a rough day..some days no need for none of that, but why suffer.

[daworm in reply to daworm]

I actually have the pain meds prescribed for my original OA in my knees, now they are the least of my worries..I didn't mean to make it sound like I gobble pills all day everyday...I actually split the 7.5 pain med and take half most of the time, Dr sorta laughed and asked, "you sure thats enough" then he said "whatever works for you"....placebo effect? who cares....he said they aren't supposed to help much with PMR but hey, they sure help on a bad day...skelaxin, the muscle relaxer is mostly for my off/on bad back....it really doesn't do much other than allow me to sleep and I rarely take that...dont like them....

[Longtimer in reply to daworm]

Thanks for that, I am in the UK.....so some of the meds you mention I am not familiar with......

All the rheumies in my hospital tend to be the same, they stick together!...

[daworm in reply to Longtimer]

The pain meds I take are hydrocodone/acetaminophen...normally called Norco, Vicodin, Lortab...xanax is an anti anxiety med...when not used to excess or continuesly they seem to work well...pred gives me the jitters at times and a tiny bit of xanax helps in the evening..

[Longtimer in reply to daworm]

ok thank you....

[Perkey]

I always take paracetamol but doesn't always seem strong enough

[Toenti]

Hi Purple girl, beside the right dose of Prednisolon, I am using CBD oil,which eases a lot of the residual aches and pains. It does not seem to have any side-effects,

My best wishes

Edith(Toenti)

[Purplegirl70 in reply to Toenti]

Wow, had no idea CBD oil could help. I have a bottle of CBD+ given to me by a friend to help with depression. Presumably we are talking about the same thing?

[oiseau222]

I have been using a CBD (cannabinoid) pain relief cream for all my sore, aching, swollen joints, muscles, etc. It doesn't cure them or make them go away, but it definitely stops the pain for several hours. Sometimes I wake up in the middle of the night in severe pain, and I appy it wherever I can reach. If you need more information about CBD and pain, you can google it, or email me and I'll send you some links. I don't sell it, but I recommend it to my friends. I'm in the U.S., but there are many European sellers. I hope you feel better. Robin

[Purplegirl70]

Spoken to my Dr earlier today and she has agreed that I can stay on 15mg a day for a little longer before reducing it to 14mg. Once I have been on 14mg for 3 weeks my bloods will need to be tested again. I mentioned to her that my mother has Rheumatoid arthritis as well as Osteoarthritis so I will be tested for RA at the same time. Thankfully I am on leave from work all next week so I'll have plenty of time to rest

[granny-b]

I too have very ouchy joint pain. Saw my GP this morning and she prescribed low dose co-codamol which I am wary of. I don't like the possibility of it affecting my driving which gives me access to the outside world. She also gave me a NSAID gel as she said local application is OK with pred. I want to believe her if it eases the pain.

I have artritis as well as PMR following GCA. Want to have less pain which has only come on at the 'magic 5mg' which I have been on since July.

[PMRpro Ambassador in reply to granny-b]

So what about trying a "magic 6mg"? It's like the adrenal recovery - for some people it starts to happen at 10mg, for others not until 7mg. You can't say "5mg is special", it isn't.

[granny-b in reply to PMRpro]

My rheumatologist has suggested methotrexate if I continue to have trouble at 5mg. As I think much of the pain is osteoarthritis I don't want to take more steroids. I was fortunate to listen to Prof Dasgupta who suggests that over 10g steroids is too much and I definitely want to get off them.

[PMRpro Ambassador in reply to granny-b]

There are experts who STOP methotrexate at 5mg since it is felt it does nothing to help at that level. It is a very low dose - one I would be happy to stay on for the rest of my life.

On BD's standards - he'd be offering me tocilizumab it seems. I'm at at least 20g total dose...

[Purplegirl70]

I plan to try CBD drops the next time I am in pain. I'll let people know how I get on in case it helps anyone else

[oiseau222 in reply to Purplegirl70]

I take the drops and it is hard to tell if there is really a measurable difference in pain, although for me, there is an increase in energy. The topical (cream, ointment or gel) is amazing. It works within five or ten minutes and the pain subsides. I hope you feel better soon.

[Purplegirl70 in reply to oiseau222]

Thanks for the advice. I've seen a number of ointments for sale online but have no idea which to get. Any recommendations?

[oiseau222 in reply to Purplegirl70]

I am in the U.S. and buy from websites here which have no or low shipping charges and also sell on Amazon. The topicals can weigh anywhere from one to 6 ounces, depending on if they are liquid or ointment. They may also contain arnica (for swelling), various essential oils including camphor and menthol. If you are sensitive to fragrance, keep this in mind when choosing. Usually the scent disappates upon application, but I had to return one with such a strong vanilla fragrance that it affected my sinuses all night. If you would like me to tell you which ones I've tried, liked and continue to use, let me know. I used to use a compounded pain cream with nsaids and other drugs, but I have chronic kidney disease and can't use nsaids, so even though these helped, I couldn't use them often. The CBD topicals work as well, without the drugs. Also, the compounds cost +/-$50 per ounce, about the same as cbd.

[Purplegirl70 in reply to oiseau222]

If you could let me know what ones you've tried that would be good.

[oiseau222 in reply to Purplegirl70]

receptranaturals.com/produc... RECEPTRA NATURALS. They also make a good (for me) cbd sublingual oil.

RESTORATIVE BOTANICALS restorativebotanicals.com/r... I use the balm as well as the muscle relief cream and buy the smaller sizes. I also use their cbd oils and like the company.

Both the above have good customer service, provide lab testing and research on their cannabanoids and offer a good product.

I use a massage oil and topical ointment that I get from MassageWarehouse. I don't know if they shipmassagewarehouse.com/search... internationally.

They sell their "own" brand and a few others that have a good reputation.

I have used some that I won't recommend, but I have read good reviews about Endocca and Elixinol.

I have a compounding pharmacist for some of my own and my pets's meds, and I spoke with her about CBD. She also compounds, with an RX, pain drugs, but as I mentioned, I have to avoid nsaids. She began selling a few cbd products, including a topical that she has private labeled.

Many of the cbd companies do provide private labeling for others.

Again, these topicals are small in quantity, anywhere from 15 ml -2 ounces, and the cost seems to be about the same, give or take a few dollars.

I invested in trying several of the pain creams, because they are something I will be using for the rest of my life, and I want to know that there is something to help me when I need it. I won't be trying new ones, unless someone recommends it highly. Remember that everyone is unique, and you may need a higher or lower strength of cbd in your cream than someone else. I've tried three or four strengths and frankly haven't seen that much difference. Again, they are expensive, and they are definitely worth it to me.

I hope this has helped you. Please don't hesitate to get it touch if you have any questions I might be able to help with. Also, if you do start with it, I'd like to hear your experiences.

Best...Robin