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Do I have PMR? This is getting ridiculous.
Hi everyone, None of my doctors can give me a definitive diagnosis. I have two rheumatologists and a GP. One of my rheumys is at the Mayo clinic. My diagnosis has changed from myositis to PMR to an "mRNA vaccine-induced myalgia" and then back to myositis, which was ruled out by an MRI. Then it was
Hi everyone, None of my doctors can give me a definitive diagnosis. I have two rheumatologists and a GP. One of my rheumys is at the Mayo clinic. My diagnosis has changed from myositis to PMR to an "mRNA vaccine-induced myalgia" and then back to myositis, which was ruled out by an MRI. Then it was
sferios
in
PMRGCAuk
1 year ago
confused
I had my second appointment with the rheumatologist and left feeling confused. I’ve been taking 20mg prednisolone for two weeks and the improvement has been amazing. I no longer waddle when I walk and I’m not being kept awake every time I move in bed. I can reach up to open a window when I wake up and
I had my second appointment with the rheumatologist and left feeling confused. I’ve been taking 20mg prednisolone for two weeks and the improvement has been amazing. I no longer waddle when I walk and I’m not being kept awake every time I move in bed. I can reach up to open a window when I wake up and
Nanatoo
in
PMRGCAuk
1 year ago
Hair loss- PMR- Prednisolone
A while back my hair was coming out quite a lot, I was wearing it long but had it cut which seemed to help quite a bit, but now it has started to get worse again. Is this due to steroids or PMR? Does anyone have the same experience? I find it quite distressing to have so much coming out every time I
A while back my hair was coming out quite a lot, I was wearing it long but had it cut which seemed to help quite a bit, but now it has started to get worse again. Is this due to steroids or PMR? Does anyone have the same experience? I find it quite distressing to have so much coming out every time I
Claremont2023
in
Foggy's "Invisible Illness" Support
1 year ago
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PMR Update
Visited yet another Rheumatologist this past week. The last Rheumatologist wanted me off the prednisone without taper to see how bad I can get so he can order yet another PET scan. Needless to say, I went to get a second opinion. Yes, this Rheumatologist stated I was to young to have PMR. However,
Visited yet another Rheumatologist this past week. The last Rheumatologist wanted me off the prednisone without taper to see how bad I can get so he can order yet another PET scan. Needless to say, I went to get a second opinion. Yes, this Rheumatologist stated I was to young to have PMR. However,
SMH4CRNA
in
PMRGCAuk
1 year ago
Sore Throat
I’m currently down to 4mg of prednisolone and have a constant sore throat and dry mouth during the night . Is this normal ? What can I do to relieve the soreness and will it eventually improve as I reduce my steroids?
I’m currently down to 4mg of prednisolone and have a constant sore throat and dry mouth during the night . Is this normal ? What can I do to relieve the soreness and will it eventually improve as I reduce my steroids?
Conwy_wales
in
PMRGCAuk
1 year ago
chemo
I was diagnosed last fall with limited GPA (in my ears). Was on methotrexate and low dose prednisone until a few weeks ago. Diagnosed with breast cancer in may so taken off the methotrexate when I started chemo last week. One of my chemo drugs is cytoxan. My question is, has anyone else had this
I was diagnosed last fall with limited GPA (in my ears). Was on methotrexate and low dose prednisone until a few weeks ago. Diagnosed with breast cancer in may so taken off the methotrexate when I started chemo last week. One of my chemo drugs is cytoxan. My question is, has anyone else had this
BellaSarge
in
Vasculitis UK
1 year ago
Flare after vaccine
Good morning dear people. Ten days ago I received the new RSV vaccine. My husband is undergoing treatment for stage three cancer so we were advised to get the RSV, Flu and new Covid booster when it comes out. We both had body aches, low grade fever and fatigue for two days after getting the RSV vaccine
Good morning dear people. Ten days ago I received the new RSV vaccine. My husband is undergoing treatment for stage three cancer so we were advised to get the RSV, Flu and new Covid booster when it comes out. We both had body aches, low grade fever and fatigue for two days after getting the RSV vaccine
Blackcatlover
in
PMRGCAuk
1 year ago
Fecal Microbiota Transplantation (FMT) For PD And Much Much More
While many of us are aware of the potential that FMT has shown for PD, Clostridium difficile (C. diff) and IBS that has not responded to standard therapy, I wrote this to highlight the fact that FMT has shown the potential to also help a multitude of other diseases and health issues that are often seen
While many of us are aware of the potential that FMT has shown for PD, Clostridium difficile (C. diff) and IBS that has not responded to standard therapy, I wrote this to highlight the fact that FMT has shown the potential to also help a multitude of other diseases and health issues that are often seen
chartist
in
Cure Parkinson's
1 year ago
Mouth ulcers with GCA and prednisone?
Has anyone experienced problems with persistent mouth ulcers? These have become more frequent as I have reduced my prednisone dosage. I am now down to 6.5 mg prednisone (I have GCA) and have about five ulcers in my mouth right now which is quite painful. I am wondering if anyone has any advice as to
Has anyone experienced problems with persistent mouth ulcers? These have become more frequent as I have reduced my prednisone dosage. I am now down to 6.5 mg prednisone (I have GCA) and have about five ulcers in my mouth right now which is quite painful. I am wondering if anyone has any advice as to
Charkha
in
PMRGCAuk
1 year ago
1mg prednisolone….. 0mg
hi I have managed to get down to taking just 1mg pred from 20mg over 18mths . Now I am taking just 1mg a few times a week… when can I stop completely and how will I know if my adrenal glands are coping please?
hi I have managed to get down to taking just 1mg pred from 20mg over 18mths . Now I am taking just 1mg a few times a week… when can I stop completely and how will I know if my adrenal glands are coping please?
Tayzee
in
PMRGCAuk
1 year ago
GCA and Ear Swelling, Pressure
Can GCA cause ear swelling ? I have GCA and constant ear pressure, soreness. My general practitioner couldn’t find any thing that would cause it, nor could an ear-nose-throat doctor. Even did a hearing test and all said everything is good. Would this be a flare? I’m on Actemra and 4 mg prednisone
Can GCA cause ear swelling ? I have GCA and constant ear pressure, soreness. My general practitioner couldn’t find any thing that would cause it, nor could an ear-nose-throat doctor. Even did a hearing test and all said everything is good. Would this be a flare? I’m on Actemra and 4 mg prednisone
Pamk1949
in
PMRGCAuk
1 year ago
Is it PMR?
Diagnosed with PMR approximately 2019. Came off Prednisone in October 2020. Saw Rheumatologist who did repeat bloods. At the time I was discharged my ESR was 26. Fast forward to 2023. Severe pain in base of skull and neck (right side only) affecting shoulder, shoulder blade and upper muscles in arm.
Diagnosed with PMR approximately 2019. Came off Prednisone in October 2020. Saw Rheumatologist who did repeat bloods. At the time I was discharged my ESR was 26. Fast forward to 2023. Severe pain in base of skull and neck (right side only) affecting shoulder, shoulder blade and upper muscles in arm.
Purplelamp
in
PMRGCAuk
1 year ago
tapering problem
hi, I am hoping for some advice I have PMR and been on prednisolone for approx 18 months. After a few ups and downs with tapering from15 gms originally, I had got down to 10 , then after 4 weeks to 9, another 4 weeks to 8, then again four weeks to 7 but have been in so much pain since reducing to
hi, I am hoping for some advice I have PMR and been on prednisolone for approx 18 months. After a few ups and downs with tapering from15 gms originally, I had got down to 10 , then after 4 weeks to 9, another 4 weeks to 8, then again four weeks to 7 but have been in so much pain since reducing to
Sukian
in
PMRGCAuk
1 year ago
5 weeks to diagnose GCA
Hi. I started to get sick June 24, 2023. Progressively worse each week. Headache, sore temples, sleeping a lot. Week 2 fevers every 4/5 hours. Tylenol for that. Night sweats. Week 3 getting weaker, symptoms more severe. Glands in neck swollen. Week 5 jaw does not want to open much or chew. Painful
Hi. I started to get sick June 24, 2023. Progressively worse each week. Headache, sore temples, sleeping a lot. Week 2 fevers every 4/5 hours. Tylenol for that. Night sweats. Week 3 getting weaker, symptoms more severe. Glands in neck swollen. Week 5 jaw does not want to open much or chew. Painful
Groda
in
NRAS
1 year ago
Humidity and PMR
We have had very high humidity for some weeks and my pelvis is so rheumatic. Not my shoulders. I have upped my prednisone from 4 mg which it has been for months to eventually 10 mg. It is not holding it. I also have chromic back pain, but it is not a rheumatic pain and MS, so sorting things out is
We have had very high humidity for some weeks and my pelvis is so rheumatic. Not my shoulders. I have upped my prednisone from 4 mg which it has been for months to eventually 10 mg. It is not holding it. I also have chromic back pain, but it is not a rheumatic pain and MS, so sorting things out is
Jane424
in
PMRGCAuk
1 year ago
Actemra; The elephant in the room. Is it working or not working for you?
GCA Feb 2018 Prednisone therapy only. Here I am 6 and half years later and still trying to find the sweet spot with prednisone--not too much/not too little---Just right. I am trying to reduce slowly using the DSNS program because it has always worked for me. I am, however, struggling now at 4.25/4.0
GCA Feb 2018 Prednisone therapy only. Here I am 6 and half years later and still trying to find the sweet spot with prednisone--not too much/not too little---Just right. I am trying to reduce slowly using the DSNS program because it has always worked for me. I am, however, struggling now at 4.25/4.0
Blurry62
in
PMRGCAuk
1 year ago
Heart Medicine Increased inhaled steroid absorption.
There is a drug interaction between inhaled steroids, and diltiazem I found out. I recently developed an arrhythmia and was placed on Arnuity after stopping Breo. Breo can contribute to a A fib/ A flutter which I developed. After being on Arnuity(Steroid inhaler) and diltiazem for several weeks
There is a drug interaction between inhaled steroids, and diltiazem I found out. I recently developed an arrhythmia and was placed on Arnuity after stopping Breo. Breo can contribute to a A fib/ A flutter which I developed. After being on Arnuity(Steroid inhaler) and diltiazem for several weeks
Karenjaninaz
in
PMRGCAuk
1 year ago
Alendronic acid
I have stopped taking weekly alendronic acid, as I have started getting sharp pains at the base of my oesophagus. I am on 4 and a half mg of prednisone and biweekly Actemra. No pain. Feel great. I eat calcium laden foods and take daily supplements. Any opinions as I feel guilty?!!
I have stopped taking weekly alendronic acid, as I have started getting sharp pains at the base of my oesophagus. I am on 4 and a half mg of prednisone and biweekly Actemra. No pain. Feel great. I eat calcium laden foods and take daily supplements. Any opinions as I feel guilty?!!
Strelitzia
in
PMRGCAuk
1 year ago
delaying Prednisolone by a few hours
hello, back again for some advice. I was diagnosed with PMR/GCA three and a half years ago and after a relapse I am now on 4mg. Next week I will have an abdominal and urinary tract ultrasound at 11am. I was instructed not to eat or drink for 6 hours before and to drink one litre of water one hour before
hello, back again for some advice. I was diagnosed with PMR/GCA three and a half years ago and after a relapse I am now on 4mg. Next week I will have an abdominal and urinary tract ultrasound at 11am. I was instructed not to eat or drink for 6 hours before and to drink one litre of water one hour before
Dolcelatte
in
PMRGCAuk
1 year ago
Stuck in the bath
Well fibro folks... today I got stuck in the bath. Got back from urgent Gp appt for an asthma escalation..survived the 'we want you to go to hospital" by having nebuliser, ECG and prescription for yet more prednisolone. I can't shower when I i have asthma flares..steam exacerbates prob. But a warm bath
Well fibro folks... today I got stuck in the bath. Got back from urgent Gp appt for an asthma escalation..survived the 'we want you to go to hospital" by having nebuliser, ECG and prescription for yet more prednisolone. I can't shower when I i have asthma flares..steam exacerbates prob. But a warm bath
Merrrm
in
Fibromyalgia Action UK
1 year ago
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