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Flare up at 1Mg
I have dropped from 1.5mg to 1mg at my usual 4 weekly intervals and now having aches in the back of my neck, elbows and hands are tingling. I increased my pred to 3 mg today and wonder if it’s enough? Not sure how to proceed at such a low dose. Any help would be very much appreciated. Thank you.
I have dropped from 1.5mg to 1mg at my usual 4 weekly intervals and now having aches in the back of my neck, elbows and hands are tingling. I increased my pred to 3 mg today and wonder if it’s enough? Not sure how to proceed at such a low dose. Any help would be very much appreciated. Thank you.
Fredddie
in
PMRGCAuk
1 year ago
high B12 without supplementation folate low
what tests should I request? I’ve been advised to use a folic acid supplement. But why are B12 and ferritin high?
what tests should I request? I’ve been advised to use a folic acid supplement. But why are B12 and ferritin high?
PaulaG3
in
Pernicious Anaemia Society
1 year ago
pain in wrist
I was diagnosed with PMR just over 2 years ago and with the usual ‘ups downs’ and occasional flares I’m now down from 40mg (with slow tapering) to 4.5 mg of Pred. I’m left handed but have had persistent morning pain in my right wrist for the past couple of weeks. I thought it might pass as my body got
I was diagnosed with PMR just over 2 years ago and with the usual ‘ups downs’ and occasional flares I’m now down from 40mg (with slow tapering) to 4.5 mg of Pred. I’m left handed but have had persistent morning pain in my right wrist for the past couple of weeks. I thought it might pass as my body got
Gettingbetter1
in
PMRGCAuk
2 years ago
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Leflunomide no more
So my rheumatologist told me to stop taking leflunomide as it was causing me increasing numbness and mild pain in my feet and hands. I started this (20 mg/day) on September 25, 2021 and it did succeed in getting me to 5.5 mg so far. She prescribed a 10 day dose of Olystr which she claims will help flush
So my rheumatologist told me to stop taking leflunomide as it was causing me increasing numbness and mild pain in my feet and hands. I started this (20 mg/day) on September 25, 2021 and it did succeed in getting me to 5.5 mg so far. She prescribed a 10 day dose of Olystr which she claims will help flush
Alebeau
in
PMRGCAuk
2 years ago
struggling with getting a diagnosis GCA
This is my second time around, having initially presented 13 years ago aged 47, with new headache, vascular noises, jaw cramping, which responded well to prednisone…..over nearly 3 years, and then fine for 10 years. Slightly different this time, as symptoms have responded less well to steroids. The
This is my second time around, having initially presented 13 years ago aged 47, with new headache, vascular noises, jaw cramping, which responded well to prednisone…..over nearly 3 years, and then fine for 10 years. Slightly different this time, as symptoms have responded less well to steroids. The
Hidden
in
PMRGCAuk
2 years ago
GCA and PMR
a friend of mine has GCA. She is on 9mg of pred and also leflunomide, She told me today that she aches all over and it is bilateral. Is she likely to have to up her pred if at her rheumatica appointment tomorrow she is diagnosed with PMR as well? Thanks
a friend of mine has GCA. She is on 9mg of pred and also leflunomide, She told me today that she aches all over and it is bilateral. Is she likely to have to up her pred if at her rheumatica appointment tomorrow she is diagnosed with PMR as well? Thanks
Koalajane
in
PMRGCAuk
2 years ago
Leflunomide side effects
I have been taking Leflunomide 10 mg for a few weeks and initially other than feeling more sleepy in the afternoon thought I was fairing o.k . This week I am struggling with fatigue in limbs , I experienced this with methotrexate and it just got worse until I stopped methotrexate. Has anyone experienced
I have been taking Leflunomide 10 mg for a few weeks and initially other than feeling more sleepy in the afternoon thought I was fairing o.k . This week I am struggling with fatigue in limbs , I experienced this with methotrexate and it just got worse until I stopped methotrexate. Has anyone experienced
Devoid
in
PMRGCAuk
2 years ago
how to reduce pain in fingers without Methotraxate? Update
So after using small amounts of NSAID cream for painful fingers, about 2 months ago I started using ice again and my pain disappeared. Was it the ice or was it just the time for the pain to subside? I don't know but I have been completely pain free for about 2 months. Since June I have been walking about
So after using small amounts of NSAID cream for painful fingers, about 2 months ago I started using ice again and my pain disappeared. Was it the ice or was it just the time for the pain to subside? I don't know but I have been completely pain free for about 2 months. Since June I have been walking about
kulina
in
PMRGCAuk
2 years ago
Nucynta
Struggling with chronic pain . Taking tramadol 200mg but not helping. Doc has supplemented with Nucynta 50mg 3x day. Any one have any experience as to how long it takes to get relief, first few days of taking unfortunately no relief. Thanks in advance for any feedback, blessings!
Struggling with chronic pain . Taking tramadol 200mg but not helping. Doc has supplemented with Nucynta 50mg 3x day. Any one have any experience as to how long it takes to get relief, first few days of taking unfortunately no relief. Thanks in advance for any feedback, blessings!
Lespauljoe
in
My MSAA Community
2 years ago
Plasmapheresis / Therapeutic Plasma Exchange, TPE
TPE, with blood withdrawn and reinserted without the plasma, has in a small clinical single-arm trial indicated remarkable benefits in markers of various kinds including DNA damage, cellular senescence and immunity (T-cells, B-cells, NK cells). Downside appears limited. It remains to be seen if the
TPE, with blood withdrawn and reinserted without the plasma, has in a small clinical single-arm trial indicated remarkable benefits in markers of various kinds including DNA damage, cellular senescence and immunity (T-cells, B-cells, NK cells). Downside appears limited. It remains to be seen if the
Purple-Bike
in
Advanced Prostate Cancer
2 years ago
Leflunomide next drug doctor wants me to try
I ned your help again please. After a million blood tests and a PET- CT everything points to PMR diagnosis which I got 3 years ago being correct . (who would have thought it). New consultant now started the relentless you need to get your steroids down by 2.5 per 2 weeks. I told her that's not happening
I ned your help again please. After a million blood tests and a PET- CT everything points to PMR diagnosis which I got 3 years ago being correct . (who would have thought it). New consultant now started the relentless you need to get your steroids down by 2.5 per 2 weeks. I told her that's not happening
Pawscat11
in
PMRGCAuk
2 years ago
IS THIS THE START OF MY RA ?
This week my Pred came down from 55mg to 50mg and within a day or so the fingers on my right hand had started to seize up and go all stiff, this has happened on a few occasions this week until last night when I could not move them normally I had to physically manipulate them with my other hand. For
This week my Pred came down from 55mg to 50mg and within a day or so the fingers on my right hand had started to seize up and go all stiff, this has happened on a few occasions this week until last night when I could not move them normally I had to physically manipulate them with my other hand. For
WHL67
in
PMRGCAuk
2 years ago
best products
Hello,can I pick your brains please. recently diagnosed with sjorgrens.after a fight my drs gave agreed to supply some products on prescription. My first trip to the pharmacy cost me £50 and I top of this I purchase eye drops online and pay for my prescription for hydroxy. The drops I buy online
Hello,can I pick your brains please. recently diagnosed with sjorgrens.after a fight my drs gave agreed to supply some products on prescription. My first trip to the pharmacy cost me £50 and I top of this I purchase eye drops online and pay for my prescription for hydroxy. The drops I buy online
BonnyB
in
LUPUS UK
2 years ago
H2O2 therapy
Because I reject the SOC of take this and this until it doesn’t work anymore and hopefully something else will come down the pipeline before you die, I’m throwing the kitchen sink at it now. I discovered this book “the one minute cure” after reading a book called “the greatest manifestation principle
Because I reject the SOC of take this and this until it doesn’t work anymore and hopefully something else will come down the pipeline before you die, I’m throwing the kitchen sink at it now. I discovered this book “the one minute cure” after reading a book called “the greatest manifestation principle
No_stone_unturned
in
Advanced Prostate Cancer
2 years ago
some of the diy solutions for riding with foot drop
so when I first started having trouble with foot drop it made keeping my feet on the recumbent pedals tough so I made little wooden pads that clipped to my pedals, they were carved to fit my feet exactly thereby cradling my foot to the pedals and was able to ride like that for several more years
so when I first started having trouble with foot drop it made keeping my feet on the recumbent pedals tough so I made little wooden pads that clipped to my pedals, they were carved to fit my feet exactly thereby cradling my foot to the pedals and was able to ride like that for several more years
Hidden
in
My MSAA Community
2 years ago
GCA, now PMR & Rheumatoid Arthritis as well
Hello everyone, I would be very grateful for your experiences and advice. I saw my rheumatologist last week and she has diagnosed PMR & Rheumatoid arthritis in addition to GCA which I’ve had since July last year. I am currently on 12mg of Pred and have been trying to reduce to 11 which has been difficult
Hello everyone, I would be very grateful for your experiences and advice. I saw my rheumatologist last week and she has diagnosed PMR & Rheumatoid arthritis in addition to GCA which I’ve had since July last year. I am currently on 12mg of Pred and have been trying to reduce to 11 which has been difficult
Hidden
in
PMRGCAuk
2 years ago
Monitoring Lactate dehydrogenase (LDH)
Do all MOs monitor LDH regularly? Our MO in the UK does not. Whenever we have a chance to get it done, we monitor it ourselves. If I look at my husband's ALP, it does not seem to correlate to PSA rises in a pattern but LDH appears to do so. In June, before starting Docetaxel, his PSA was 99 and LDH
Do all MOs monitor LDH regularly? Our MO in the UK does not. Whenever we have a chance to get it done, we monitor it ourselves. If I look at my husband's ALP, it does not seem to correlate to PSA rises in a pattern but LDH appears to do so. In June, before starting Docetaxel, his PSA was 99 and LDH
spw1
in
Advanced Prostate Cancer
2 years ago
Alternate treatment for FND/FMD affecting gait and balance
My gait and balance are both terrible, and I have been diagnosed with FMD. The only treatments which have been suggested to me are physical therapy and cognitive behavior therapy. Both are totally ineffective for me. Does anyone know of other treatments for FND/FMD which affects ONLY GAIT AND BALANCE
My gait and balance are both terrible, and I have been diagnosed with FMD. The only treatments which have been suggested to me are physical therapy and cognitive behavior therapy. Both are totally ineffective for me. Does anyone know of other treatments for FND/FMD which affects ONLY GAIT AND BALANCE
sgaetna2013
in
Functional Neurological Disorder - FND Hope
2 years ago
Advice on taking Leflunomide
Hi I’m new to the forum but have reading all your posts and do not feel alone in this awful condition of PMR. I was diagnosed October 2021 at the age of 60. I have had 3 relapses since them and after reading your posts feel this could be due to my prednisone being reduced too quickly. My consultant
Hi I’m new to the forum but have reading all your posts and do not feel alone in this awful condition of PMR. I was diagnosed October 2021 at the age of 60. I have had 3 relapses since them and after reading your posts feel this could be due to my prednisone being reduced too quickly. My consultant
Hidden
in
PMRGCAuk
2 years ago
Flare ups and coping with family life…. 😞
Hi all, hope everyone is feeling some evening rest! So this week I have had a terrible flare up and have felt bed ridden.. I have my boys to look after and it’s the summer hols of course. Just wondering if anyone has any advice or ideas on ways to manage family life and resting ? I mean I just get
Hi all, hope everyone is feeling some evening rest! So this week I have had a terrible flare up and have felt bed ridden.. I have my boys to look after and it’s the summer hols of course. Just wondering if anyone has any advice or ideas on ways to manage family life and resting ? I mean I just get
Busymumma22
in
Fibromyalgia Action UK
2 years ago
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