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Experiences with
Mast cell activation syndrome (MCAS)
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Still on hold for stem cell transplant
David has now completed 3 cycles of Vidaza. He had a bone marrow biopsy several weeks ago. At first we thought the results were good, that his cancer cells had been reduced sufficiently to proceed with transplant. After our local oncologist spoke to the transplant specialist at Mayo, we received word
David has now completed 3 cycles of Vidaza. He had a bone marrow biopsy several weeks ago. At first we thought the results were good, that his cancer cells had been reduced sufficiently to proceed with transplant. After our local oncologist spoke to the transplant specialist at Mayo, we received word
dwolden
in
CLL Support
4 months ago
reversal of approval
Ihave been on Buprenorphine for two and a half month and doing well. I was able to stop the Pramipexol. All of a sudden, the pharmacy says it can’t refill it as it doesn’t carry an indication for RLS.. They are Dayi g their pharmacist made a mistake. My doctor has spoken to them and they are demanding
Ihave been on Buprenorphine for two and a half month and doing well. I was able to stop the Pramipexol. All of a sudden, the pharmacy says it can’t refill it as it doesn’t carry an indication for RLS.. They are Dayi g their pharmacist made a mistake. My doctor has spoken to them and they are demanding
teakabeagle
in
Restless Legs Syndrome
8 months ago
Propafenone Back!!!
JimF here in the U.S. A while back I posted regarding the critical shortages of Propafenone, which then bled over to shortages of Flecainide and Tikosyn.......which may continue until February. I'm happy to say that my 90 day supply of propafenone has just been refilled by my pharmacy, a truly "thank
JimF here in the U.S. A while back I posted regarding the critical shortages of Propafenone, which then bled over to shortages of Flecainide and Tikosyn.......which may continue until February. I'm happy to say that my 90 day supply of propafenone has just been refilled by my pharmacy, a truly "thank
frazeej
in
AF Association
8 months ago
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HSCT early in MS
This is an interesting story about two women who went to Mexico and got Hematopoietic Stem Cell Transplantation early in their disease. One, who was diagnosed with PPMS, received her transplant in the third year after diagnosis. The other, who was diagnosed with RRMS, got her transplant just twelve
This is an interesting story about two women who went to Mexico and got Hematopoietic Stem Cell Transplantation early in their disease. One, who was diagnosed with PPMS, received her transplant in the third year after diagnosis. The other, who was diagnosed with RRMS, got her transplant just twelve
BettysMom
in
My MSAA Community
4 months ago
Stem Cell transplant register search goes on…
Unfortunately my next appointment with Consultant has been delayed until early April as they are no further advanced in their search for matches on transplant register. The Nuclear medicine tests that I have just had will be added to MyChart which Addenbrookes uses to show appointments, test results
Unfortunately my next appointment with Consultant has been delayed until early April as they are no further advanced in their search for matches on transplant register. The Nuclear medicine tests that I have just had will be added to MyChart which Addenbrookes uses to show appointments, test results
LFCLove
in
MPN Voice
4 months ago
Requip and Collagen
I have been taking Requip for several years and started taking Collagen last year as I had come off HRTand my hair and nails were in a terrible condition. I seem to remember seeing that taking both was not advised, is that correct? I have gone back on HRT but it has not made any difference.
I have been taking Requip for several years and started taking Collagen last year as I had come off HRTand my hair and nails were in a terrible condition. I seem to remember seeing that taking both was not advised, is that correct? I have gone back on HRT but it has not made any difference.
Brenda48
in
Restless Legs Syndrome
9 months ago
Has anyone navigated Medicare while trying to get the TPIAT?
Hi All 👋 We recently had a patient reach out to us about the TPIAT while on Medicare. Medicare covers the removal of the pancreas, but it does not cover the islet cell transplantation; the patient was quoted $70K for the islet cell transplantation. 🙁 They ask that anyone who has also navigated the
Hi All 👋 We recently had a patient reach out to us about the TPIAT while on Medicare. Medicare covers the removal of the pancreas, but it does not cover the islet cell transplantation; the patient was quoted $70K for the islet cell transplantation. 🙁 They ask that anyone who has also navigated the
Skye_MC
Administrator
in
Chronic Pancreatitis Support
10 months ago
Update
I've finally come off ropinirole and am taking pregabalin150 mg only. It's not been easy. It's now 4 weeks since the last sliver of ropinirole and since then the symptoms have started to slowly creep back. I know from advice here that this is to be expected and the pregabalin dose can be increased. The
I've finally come off ropinirole and am taking pregabalin150 mg only. It's not been easy. It's now 4 weeks since the last sliver of ropinirole and since then the symptoms have started to slowly creep back. I know from advice here that this is to be expected and the pregabalin dose can be increased. The
Firenze1
in
Restless Legs Syndrome
9 months ago
getting off pramipexole
I’ve run into a RLP problem trying to get off pramipexole. I reduced the pramipexole from .5 mg to .375 mg. I’m into my 4 th week. I’ve increased the Gabapentin to 600 mg and having to use codine twice daily. I’m taking 5 mg of codine per dose. I’m still having from moderate to severe RLS pain. I need
I’ve run into a RLP problem trying to get off pramipexole. I reduced the pramipexole from .5 mg to .375 mg. I’m into my 4 th week. I’ve increased the Gabapentin to 600 mg and having to use codine twice daily. I’m taking 5 mg of codine per dose. I’m still having from moderate to severe RLS pain. I need
Moretravel1
in
Restless Legs Syndrome
9 months ago
Glad to see more and more players are jumping into the stem cell therapy
A Phase 1/2a clinical trial evaluating TED-A9, a human stem cell-based therapy, in people with Parkinson’s disease has finished dosing with no safety concerns identified to date. Embryonic stem cell transplant showing safety in 12 patients The therapy, delivered as a cell transplant directly into
A Phase 1/2a clinical trial evaluating TED-A9, a human stem cell-based therapy, in people with Parkinson’s disease has finished dosing with no safety concerns identified to date. Embryonic stem cell transplant showing safety in 12 patients The therapy, delivered as a cell transplant directly into
Farooqji
in
Cure Parkinson's
4 months ago
Stem cell transplant
Hello, Has anyone woth AMN here ever had a stem cell transplant as a result of a diagnoses involving cerebral involvement? Please tell all! Is it a viable treatment option?
Hello, Has anyone woth AMN here ever had a stem cell transplant as a result of a diagnoses involving cerebral involvement? Please tell all! Is it a viable treatment option?
A7x1823eb
in
AMN EASIER
5 months ago
Coming out of a very very long dark tunnel.
Those of you who have the patience to read my sometimes rambling posts will know that I was taking 6mg of Ropinirole a day and had been taking it for quite some time with Neupro patches before that anyway I finally went private to see a terrific Doctor Jose Thomas at the Spire Hospital in Cardiff who
Those of you who have the patience to read my sometimes rambling posts will know that I was taking 6mg of Ropinirole a day and had been taking it for quite some time with Neupro patches before that anyway I finally went private to see a terrific Doctor Jose Thomas at the Spire Hospital in Cardiff who
HipHop1972
in
Restless Legs Syndrome
9 months ago
Augmentation- Report via Yellow Card Scheme
The MHRA is encouraging people to report adverse side effects via the Yellow Card Scheme. If you have suffered drug induced worsening on Ropinirole, Pramipexole or the Neupro patch, please report to help raise awareness among medical professionals. https://content.govdelivery.com/accounts/UKMHRA/bulletins
The MHRA is encouraging people to report adverse side effects via the Yellow Card Scheme. If you have suffered drug induced worsening on Ropinirole, Pramipexole or the Neupro patch, please report to help raise awareness among medical professionals. https://content.govdelivery.com/accounts/UKMHRA/bulletins
Joolsg
in
Restless Legs Syndrome
9 months ago
Haemolysis
Hi all. Sent for Monitor my Health blood test for TSH, T4+T3. Sent 1st thing Tues am. Only got a response Thurs pm to say test received. Could the delay by Royal Mail have resulted in Haemolysis? My first test in May went thru no probs, other than getting enough blood. This time, after all the tips I
Hi all. Sent for Monitor my Health blood test for TSH, T4+T3. Sent 1st thing Tues am. Only got a response Thurs pm to say test received. Could the delay by Royal Mail have resulted in Haemolysis? My first test in May went thru no probs, other than getting enough blood. This time, after all the tips I
Lottyplum
in
Thyroid UK
11 months ago
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis.
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis. To the Editor: Myelofibrosis is a Philadelphia-negative chronic myelo-proliferative-neoplasm (MPN) characterized by alteration of the JAK–STAT path-way, primarily through activating mutations in
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis. To the Editor: Myelofibrosis is a Philadelphia-negative chronic myelo-proliferative-neoplasm (MPN) characterized by alteration of the JAK–STAT path-way, primarily through activating mutations in
PhysAssist
in
MPN Voice
5 months ago
Just wanted to share my Primary Myelofibrosis journey so far…….
Hi all, My diagnosis is Primary Myelofibrosis +Jak-2 &V617F mutation which was in August 2022. This was found after several visits to GP for chest infections and ultrasound scans which found an enlarged spleen. Also had bloods and bone marrow biopsy sent to Bart’s hospital for confirmation. Initial
Hi all, My diagnosis is Primary Myelofibrosis +Jak-2 &V617F mutation which was in August 2022. This was found after several visits to GP for chest infections and ultrasound scans which found an enlarged spleen. Also had bloods and bone marrow biopsy sent to Bart’s hospital for confirmation. Initial
LFCLove
in
MPN Voice
5 months ago
GP referred me to Endocrinology
hi I really hope someone can help… I’m diagnosed with Ehlers Danlos syndrome hypermobility type and fibromyalgia. I was diagnosed with bipolar disorder after a single episode of psychosis over a decade ago. pain is an every day thing but the past 18 months I’ve felt on a slippery slope. Usually
hi I really hope someone can help… I’m diagnosed with Ehlers Danlos syndrome hypermobility type and fibromyalgia. I was diagnosed with bipolar disorder after a single episode of psychosis over a decade ago. pain is an every day thing but the past 18 months I’ve felt on a slippery slope. Usually
Kaatse
in
Thyroid UK
8 months ago
No more propafenone!!!! What???
I'm in the U.S., diagnosed PAF ~3 years ago. Have achieved excellent control with propafenone (Rythmol). My pharmacy informed me they cannot refill my prescription, as there is a supply side problem with propafenone. From what I have read, there is a dangerous shortage of propafenone in the U.S and
I'm in the U.S., diagnosed PAF ~3 years ago. Have achieved excellent control with propafenone (Rythmol). My pharmacy informed me they cannot refill my prescription, as there is a supply side problem with propafenone. From what I have read, there is a dangerous shortage of propafenone in the U.S and
frazeej
in
AF Association
9 months ago
Psilocybin
Dear friends: I recently read a post by someone who had a resolution of RLS after medically supervised use of psilocybin. After taking Mirapex, Gabapentin, OxyContin, Methadone, and Horizant, I am desperate for alternatives. The poster lives in CA as do I. I am unable to locate the post via searching
Dear friends: I recently read a post by someone who had a resolution of RLS after medically supervised use of psilocybin. After taking Mirapex, Gabapentin, OxyContin, Methadone, and Horizant, I am desperate for alternatives. The poster lives in CA as do I. I am unable to locate the post via searching
JustVisiting23
in
Restless Legs Syndrome
9 months ago
Side Effects - Ropinirole & Pramipexole
Hi all, I found that the generic Ropinirole gave me nausea but the commercial ReQuip didn't, now ReQuip is being manufactured under license for GSK and the "commercial" ReQuip is giving me nausea. I have thus switched to Pramipexole and I am currently 3 days into GLEPARK generic version, it is giving
Hi all, I found that the generic Ropinirole gave me nausea but the commercial ReQuip didn't, now ReQuip is being manufactured under license for GSK and the "commercial" ReQuip is giving me nausea. I have thus switched to Pramipexole and I am currently 3 days into GLEPARK generic version, it is giving
PaddyMac1
in
Restless Legs Syndrome
9 months ago
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