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Mast cell activation syndrome (MCAS)
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Tocilizumab
I have GCA and PMR. I am on 40mg Pred. The inflammation markers have normalised, but I still have headaches. Doctors want to reduce Pred because of the side effects I am experiencing. I started Methotrexate injections, but they were paused for the last two weeks to see if they were causing the headaches
I have GCA and PMR. I am on 40mg Pred. The inflammation markers have normalised, but I still have headaches. Doctors want to reduce Pred because of the side effects I am experiencing. I started Methotrexate injections, but they were paused for the last two weeks to see if they were causing the headaches
PQXZT
in
PMRGCAuk
2 years ago
Gabapentin for RLS
I was diagnosed with RLS around three weeks ago and have now been prescribed Gabapentin by my GP having rejected his initial prescription of Ropinirole. My RLS symptoms were initially very severe at night but I was generally symptom free during the day. This has now altered and I am now experiencing
I was diagnosed with RLS around three weeks ago and have now been prescribed Gabapentin by my GP having rejected his initial prescription of Ropinirole. My RLS symptoms were initially very severe at night but I was generally symptom free during the day. This has now altered and I am now experiencing
DonWilliams
in
Restless Legs Syndrome
2 years ago
Joining the Group
Hi, Folks. I am joining as a newly diagnosed SLL patient, currently under treatment with BTKi and Gazyva. So far, I have read through many posts and have been comforted by your experiences and ways of coping with our ongoing immunity issues. I honestly feel very confident that these new treatments
Hi, Folks. I am joining as a newly diagnosed SLL patient, currently under treatment with BTKi and Gazyva. So far, I have read through many posts and have been comforted by your experiences and ways of coping with our ongoing immunity issues. I honestly feel very confident that these new treatments
tleachhsv
in
CLL America Support
2 years ago
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Depressed, hopeless and sleep deprived with RLS. HELP??
I’ve had RLS for 40 years and have been on almost every medicine out there. I’ve been in Requip for 6 years - 2 mg XL, 2 2mg Requip along with clonopin & methadone. My neurologist of 15 years has given up on me. I saw another one a few weeks ago and she said everything she’d prescribe, I’ve already
I’ve had RLS for 40 years and have been on almost every medicine out there. I’ve been in Requip for 6 years - 2 mg XL, 2 2mg Requip along with clonopin & methadone. My neurologist of 15 years has given up on me. I saw another one a few weeks ago and she said everything she’d prescribe, I’ve already
SleeplessinDenver
in
Restless Legs Syndrome
2 years ago
anxious
hi all Im looking for stories of people who took ages to get pregnant but then had a normal pregnancy and birth please. From their first bfp. I’ve finally (after 5 long years) got my first ever BFP. (Could barely believe it but nearly 2 weeks and 5 tests later it’s slowly sinking in) I just can’
hi all Im looking for stories of people who took ages to get pregnant but then had a normal pregnancy and birth please. From their first bfp. I’ve finally (after 5 long years) got my first ever BFP. (Could barely believe it but nearly 2 weeks and 5 tests later it’s slowly sinking in) I just can’
Lily4yrttc
in
Fertility Network UK
2 years ago
ATG treatment /Rabbit antigens
Hi as previously explained I am awaiting bone marrow transplant. Have been told I will need rabbit antigens or ATG ahead of the process. From what the consultant has said it can cause lots of side effects eg high temp amongst other things. Has anybody else had this treatment? Thanks Joanne
Hi as previously explained I am awaiting bone marrow transplant. Have been told I will need rabbit antigens or ATG ahead of the process. From what the consultant has said it can cause lots of side effects eg high temp amongst other things. Has anybody else had this treatment? Thanks Joanne
Platelets2022
in
Leukaemia Support
2 years ago
Pred affects glucose...what about thyroid?
i have been struggling to reduce my pred dose. Since I went from 22.5 to 20 every day has been different. The first day was ok. No real change. Then my pain was high....I was shakey, very tired/exhausted,efeated for the rest. Today my pain is a smidge better..but I am so tired. I have that out
i have been struggling to reduce my pred dose. Since I went from 22.5 to 20 every day has been different. The first day was ok. No real change. Then my pain was high....I was shakey, very tired/exhausted,efeated for the rest. Today my pain is a smidge better..but I am so tired. I have that out
Wallysma
in
PMRGCAuk
2 years ago
blood test bingo!
I've just been to Bristol stem cell department in preparation for a possible Stem cell transplant. I had to have 14 phials of blood taken for tests. Is this a record at one sitting? !!
I've just been to Bristol stem cell department in preparation for a possible Stem cell transplant. I had to have 14 phials of blood taken for tests. Is this a record at one sitting? !!
Scaredy_cat
in
MPN Voice
2 years ago
Just been approved for Vitamin B12 injection treatment.
hello everyone this is my first post. I have been experiencing many of the symptoms of functional b12 deficiency/pernicious anemia for close to 7 years. My doctor was reluctant for whatever reason to authorize the injections, even though I had a positive parietal cell antibody test. I guess my question
hello everyone this is my first post. I have been experiencing many of the symptoms of functional b12 deficiency/pernicious anemia for close to 7 years. My doctor was reluctant for whatever reason to authorize the injections, even though I had a positive parietal cell antibody test. I guess my question
MikeyO
in
Pernicious Anaemia Society
2 years ago
Insomnia add CBD oil
CBD oil acts on different receptors than Opioids and THC . If you are taking low dose CBD with THC or medical marijuana and you still suffer insomnia add extra pure CBD oil. If you suffer from opioid insomnia add PURE CBD OIL always sublingual it has some many health benefits a great nights sleep
CBD oil acts on different receptors than Opioids and THC . If you are taking low dose CBD with THC or medical marijuana and you still suffer insomnia add extra pure CBD oil. If you suffer from opioid insomnia add PURE CBD OIL always sublingual it has some many health benefits a great nights sleep
Shumbah
in
Restless Legs Syndrome
2 years ago
Thalassemia and PA
Hello, I've been telling everyone I know about PA, and so far two friends quite possibly have it. One definitely. But my nieces husband and daughter have Thalassemia. A very rare genetic blood disorder. When i googled it, I was surprised to see it can be linked to b12d and PA. Does anyone here have this
Hello, I've been telling everyone I know about PA, and so far two friends quite possibly have it. One definitely. But my nieces husband and daughter have Thalassemia. A very rare genetic blood disorder. When i googled it, I was surprised to see it can be linked to b12d and PA. Does anyone here have this
EllaNore
in
Pernicious Anaemia Society
2 years ago
Does half dose of sertraline make any difference?
I’ve spoken to a GP this morning (not my usual one, sadly) about my restless legs having returned since taking sertraline. She mentioned other antidepressants as an alternative but all of them are listed as having restless legs as side effects. She suggested halving the dose. As I’m only on the lowest
I’ve spoken to a GP this morning (not my usual one, sadly) about my restless legs having returned since taking sertraline. She mentioned other antidepressants as an alternative but all of them are listed as having restless legs as side effects. She suggested halving the dose. As I’m only on the lowest
NJB71
in
Restless Legs Syndrome
2 years ago
3 years Buprenorphine Success.
BUPRENORPHINE Hi everyone as you know know October 29th will be 3rd anniversary for 2mg Buprenorphine. Although the Buprenorphine worked from night one what I did not expect was the PTSD . I did struggled with PTSD I continued on helping other access buprenorphine in as many countries as possible
BUPRENORPHINE Hi everyone as you know know October 29th will be 3rd anniversary for 2mg Buprenorphine. Although the Buprenorphine worked from night one what I did not expect was the PTSD . I did struggled with PTSD I continued on helping other access buprenorphine in as many countries as possible
Shumbah
in
Restless Legs Syndrome
2 years ago
Compression boots w/heat
Hello, So far the only the only things I have found to help my severe RLS is 15 mgs of methodone w/400 mgs of magnesium (long term fix about 24 hrs), hot baths with epsom salt (short term fix, maybe 30 mins.) Being how I do NOT want to be on methodone for ever. I am looking for other solutions.
Hello, So far the only the only things I have found to help my severe RLS is 15 mgs of methodone w/400 mgs of magnesium (long term fix about 24 hrs), hot baths with epsom salt (short term fix, maybe 30 mins.) Being how I do NOT want to be on methodone for ever. I am looking for other solutions.
Anguished
in
Restless Legs Syndrome
2 years ago
Here we go again!
GCA/PMR for over 5 years. Pred down to 6mg . Been taken off Tocilizumab but can’t tolerate other steroid sparers. Had appointment with Rheumie and blood test. CRP high so PET scan arranged. She has put me back up to 40mg as inflammation showing in all usual places. It feels like back to square 1. Has
GCA/PMR for over 5 years. Pred down to 6mg . Been taken off Tocilizumab but can’t tolerate other steroid sparers. Had appointment with Rheumie and blood test. CRP high so PET scan arranged. She has put me back up to 40mg as inflammation showing in all usual places. It feels like back to square 1. Has
broomfield28
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
Here we go again!!
I just wanted to say hi to all the wonderful women on this forum. I've been following peoples journeys and I'm always inspired by everyone's stories and support for each other. I've just been for my scratch as I hope to start treatment again in a few days time. Weirdly the scratch wasn't as painful
I just wanted to say hi to all the wonderful women on this forum. I've been following peoples journeys and I'm always inspired by everyone's stories and support for each other. I've just been for my scratch as I hope to start treatment again in a few days time. Weirdly the scratch wasn't as painful
Pebbles345
in
Fertility Network UK
2 years ago
constipation
Hi folks Taking Levodopa Gabapentin and Tramadol for Parkinson and Restless legs and get bad constipation can you suggest any good things to take to help this .
Hi folks Taking Levodopa Gabapentin and Tramadol for Parkinson and Restless legs and get bad constipation can you suggest any good things to take to help this .
auldreekie18
in
Restless Legs Syndrome
2 years ago
alternative to sertraline due to restless legs
I have suffered restless legs all my life. A few years ago my dr checked my ferritin level. It was very low and I took iron. My legs got better and I was elated. No one had ever told me there was such a simple solution in all my 71 years. I have also taken sertraline in the past but never associated
I have suffered restless legs all my life. A few years ago my dr checked my ferritin level. It was very low and I took iron. My legs got better and I was elated. No one had ever told me there was such a simple solution in all my 71 years. I have also taken sertraline in the past but never associated
NJB71
in
Restless Legs Syndrome
2 years ago
Very high IgE levels
Does anyone else with autoimmune PA have a sky high IgE level as I do? Since diagnosis mine has been around 2000 KIU/L (normal range <20). I don’t suffer from any of the conditions usually associated with very high serum IgE such as aspergillosis, Hodgkin’s Disease etc, so whatever has caused it is
Does anyone else with autoimmune PA have a sky high IgE level as I do? Since diagnosis mine has been around 2000 KIU/L (normal range <20). I don’t suffer from any of the conditions usually associated with very high serum IgE such as aspergillosis, Hodgkin’s Disease etc, so whatever has caused it is
summersj
in
Pernicious Anaemia Society
2 years ago
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