My doctor does not know what to do, who can help me with my pain?
Posted , 12 users are following.
I have taken the following medications prescribed by the rheumatology doctor, METHOTREXATE, HUMIRA, ACTEMRA, ORENCIA, LYRICA, CELEBREX, RINVOK, and none of these medications has been able to control my pain in almost all my joints, only prednisone 10 and 20 mg allows me to walk, and the doctor says that I must leave it because of the damage it can cause,. According to the doctor, I have polymyalgia, but he says that he does not know why these medications do not work for me nor do I know what to do, today I ask for help from the scientific world of medicine if you can help me, I have days when I do not want to live because of the pain that this disease causes me, thank you.
0 likes, 15 replies
nick67069 jorgel
Posted
I am sorry that you are suffering so much and doctors are not helping with your pain. We will be glad to try to help, but to help you better, we need to know your history to make any suggestion. Please add more information on when you were diagnosed with PMR, what was the reason Dr changed from prednisone to other medications , are you still taking prednisone, and any other pertaining info.
EileenH jorgel
Edited
I would be hi-tailing it out of his office at the earliest opportunity. He obviously knows little about PMR and is unreasonably biased against corticosteroids. there is a massive difference between 20 and 10mg, 10mg is a decent enough dose for PMR in the early stages and usually you would get lower - providing you reduce in very small steps, not more than 10% of the current dose and with at least month between steps down. You are not looking to get to zero but the lowest dose that manages the symptoms, somewhere between 5 and 10mg is very common. Maybe you should refer your doctor to the study this article is based on (the link is at the bottom of the article):
https://www.medpagetoday.org/rheumatology/generalrheumatology/66912
I have been on pred for PMR for nearly 11 years, much of it at above 10mg, and have no identifiable adverse effects. You need a doctor whose care is for his patient - and leaving you in pain and disabled when they have diagnosed PMR for which the mainstay of management is corticosteroids doesn't fit with that. Leaving your PMR unmanaged means you are at a higher risk of developing GCA - and if you develop that you MUST be given high dose pred, Actemra alone has not been shown to avoid the likelihood of total and irreversible visual loss.
If you have PMR then none of those drugs, except possibly Actemra, would work. Actemra is used alongside pred to allow a reduction in pred dose. Some doctors think it will get all patients off pred altogether -but it hasn't been trialled or approved for PMR, just for GCA. The trials for GCA showed that about half of patients are able to get off pred altogether, the majority of the rest require a lower dose than without Actemra.
Michdonn EileenH
Edited
Forum Angel, once again you are about to save another individual. Three years ago went I joined the forum I was unable to walking and fighting with my Rheumey. You and other members of the forum encouraged me to try to walk a little bit at a time, explaining to me on how to regulate taking my Pred. I had just suffered a flare on 7mg and had to go to 30mg to control the inflammation and pain. Following your advice I have had an active pretty normal pain free PMR journey. Once again I thank you for the help and knowledge you provided me. Currently on on .5 DSNS tapering to zero, IT WORKS! 🙂
lynda62707 Michdonn
Edited
hi michdonn, did you really go from 7mg to 30 for a flair? for how long, and how quickly did you reduce? I'm asking cuz I feel I've been kinda "goofing" around with this going up 5mg(and it not helping)...in order to get a flair under control. I'm just looking for answers and wondering about the ramifications. my doc is of little to no help...she wants me off of pred altogether, as do I....I just don't want this horrible shoulder pain!
EileenH lynda62707
Posted
You do need to be sure the shoulder pain is due to the PMR rather than anything else - pred won't help a rotator cuff problem or other damage.
Michdonn lynda62707
Edited
Hi Lynda, yes I had a flare the in process dropping from 8mg to 7mg. Called my Rheumey was told to increase to 9mg did so for about a week with no relief and then increased by a few more mg for about a, week, continue to do so all the way up to 20mg, fighting with my Rheumey. Finally my wife had to roll me in a wheelchair for appointment to see the Rheumey. She then up me from 20 to 30mg and I started to get some relief. After 6 weeks on 30 mg I was pain free. In that 6 week period I found the forum. I start walking with a cane 1/6 of a mile, take a 10 minute rest, walk another 1/6 mile around a litte pond in the middle of our town in the mountains. I learned about DSNS method. I worked that winter as a ski instructor. If anyone had told me that June I would be skiing that winter I would have told them YOU ARE CRAZY! Some of you who have been on the forum regularly know the story. Yes, I think the forum saved me! 🙂 Stay active, positive and try to smile! Here is smiling at you! 🙂
lynda62707 EileenH
Posted
at the risk of sounding very uneducated in all this, the rotator cuff? is that literally where the ball and socket meet? that's exactly where all my pain is. can barely brush my hair anymore!
nick67069 lynda62707
Edited
Try to ask Dr google about "rotator cuff" 😃 . Yes it is a group of muscles and tendons that surround shoulder joint. PMR makes joint injury more likely ( weaken muscles) but if it is one sided, most likely it is not PMR. Orthopedic specialist or physio may help. One of the symptoms is pain when reaching overhead and limited mobility.
Anhaga lynda62707
Posted
I have been seeing a physiotherapist since late 2015, after I'd been on pred for about five months. She definitely helped me keep non-PMR pain issues under control so for the most part I could maintain a steady slow taper until I reached my "lowest best dose". I had a number of the other pain issues which sometimes accompany PMR including, I think, costochondritis which in retrospect I think was my first symptom long before PMR proper developed. I too have dealt with shoulder problems and physio helped. Never increased pred for it. Find yourself a miracle physiotherapist who knows how to work with PMR patients. Mine understands PMR very well. Good luck!
EileenH lynda62707
Posted
https://orthoinfo.aaos.org/en/diseases--conditions/rotator-cuff-tears/
I think this is a good article - good images. And they mention "combing your hair" !
rosemary83494 jorgel
Posted
When I get a flare up as I have just recently it only ever affects my right shoulder, never had a problem with my left one at all, so everyone is different. 20mg sorted it out, and am now back to 10mg. Had a blood test this morning to see where I am on inflammation level and ESR. Hope to move down a bit more if they are ok. I should get my results online tomorrow as they usually only take 24 hours. I stayed on 20mg for 4 days, and have been on 10mg for 4 days with no pain, so as I was previously on 4mg wondering where to pitch it if the levels are ok. Somewhere just above where I was at 4mg I guess. Doctor wants me to go down 1mg a month, but not sure if she is right on this one as I believe if you go up quickly you can come down again quickly as long as you stay above where you had the problem.. What does everyone think?
EileenH rosemary83494
Posted
It depends on whether it is a flare due to an increase in disease activity or whether you overshot the dose you need. If the later then you can drop quickly to the dose above where the flare happened - no point going back where you flared. But if you were reducing a bit fast it might be 6mg and 5mg.
Michdonn rosemary83494
Posted
Hi Rosemary, normally I target the level I has last comfortable at before my flare. Once at that dosage 4 or slightly above I would reduce by an half a mg or less using the DSNS method, in a month is much too quick.
Good luck on the rest of your PMR journey. 🙂
rosemary83494 Michdonn
Posted
Got the results back from my blood test and both the PCR and ESR are 2, which is pretty amazing-never been so low. So I will drop straight to 5mg today I think from 10mg, which is one above where I was at 4mg. Take it very slowly from there though using DSNS. Things are looking up again on this seesaw ride.
Thanks for your help. Rosemary.
Tinapoly1 jorgel
Posted
Hi Jorgel, I feel your pain. When PMR hit me out of no where & within one day I was screaming as my fiance tried to lift me up to stand or to put me back down to sit.It was a pain like no other. I could only move my feet 3 inches at a time & even that was very painful. None of my doctors knew what was wrong with me until I went to my rheumatologist . Within 24 & especially 48 hours I was able to stand, sit, & walk again. I hated that I had to be put on Prednisone ,especially since I watched my dad died of a broken neck & lumbar spine for 2 decades of Prednisone on & off because of his rheumatoid arthritis. If you get on the right dose you won't need all those other drugs. I was 1st put on a high dose but quickly was able to go down to 7.5mgs. & then it took me 18 months to get down to 5mgs. .My immune system is worse than ever now after 2 years & 10 months because of the Prednisone & I thought I was going to die from the last 2 flu bugs prior to Covid 19 since I felt like I was going to drown so my rheumatologist said I must go down but after 3 months at 4.75mgs.& 4.5mgs & having major symptoms of GCA & trouble walking he said go back up. Your body will let you know if you can go down & for me I disagree with going down 1 mg. a month unless you were on a real high dose like I was in the very beginning since it took me 18 months to go down just 2.5 mgs.. I hope you can find a new doctor or that this one will do right by you. I know all my other doctors were upset when I went on long term Prednisone but no one can live in that excruciating pain so the awful side effects are worth it. Best wishes & hang in there until some doctor gets you out of your daily pain.