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Mast cell activation syndrome (MCAS)
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Is valerian ok to take with pred?
Still having difficulty sleeping due partly to pred I presume and also gastric problems (appointment with gastroenterologist tomorrow) . I do have zopoclone sleeping tablets and have taken one per night for 2 nights but reluctant to take more as know they’re are addictive . Could valerian be an alternative
Still having difficulty sleeping due partly to pred I presume and also gastric problems (appointment with gastroenterologist tomorrow) . I do have zopoclone sleeping tablets and have taken one per night for 2 nights but reluctant to take more as know they’re are addictive . Could valerian be an alternative
WillOllier
in
PMRGCAuk
3 years ago
HELP FOR RESTLESS LEGS SYNDROME
I have RLS so bad that I walk all night and get a couple of hours of sleep every other day. I live in a nightmare. Absolutely no life. Also in augmentation from Pramipexole. I had ordered a supplement for my husband who gets bad cramps at night. The supplement immediately helped him. He told
I have RLS so bad that I walk all night and get a couple of hours of sleep every other day. I live in a nightmare. Absolutely no life. Also in augmentation from Pramipexole. I had ordered a supplement for my husband who gets bad cramps at night. The supplement immediately helped him. He told
Josana13
in
Restless Legs Syndrome
3 years ago
Horizant and Burning Mouth Syndrome
Just when you think you’re getting a break…….so the Horizant is helping my RLS and I’m sleeping ok again finally but lately I noticed some BMS, Burning Mouth Syndrome. I had this before for almost a year due to an allergy to dental metals in my mouth. Three dentists told me it wasn’t possible but when
Just when you think you’re getting a break…….so the Horizant is helping my RLS and I’m sleeping ok again finally but lately I noticed some BMS, Burning Mouth Syndrome. I had this before for almost a year due to an allergy to dental metals in my mouth. Three dentists told me it wasn’t possible but when
Redeyed
in
Restless Legs Syndrome
3 years ago
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New Rheumatologist
Saw my new rheumatologist last Thursday, and so far I am impressed. Lupus unit were dismissive as my bloods are normal but she says I could be sero negative. This was at my local hospital, which on the whole does not have a very good reputation, but I have found since covid that they have improved
Saw my new rheumatologist last Thursday, and so far I am impressed. Lupus unit were dismissive as my bloods are normal but she says I could be sero negative. This was at my local hospital, which on the whole does not have a very good reputation, but I have found since covid that they have improved
donnabrain
in
Hughes Syndrome APS Forum
3 years ago
Is it common for CLL patients to undergo hematopoietic stem cell transplantation (HSCT) as treatment?
Hi guys! My husband was looking around for information and he found about this, we were wondering if this is a common treatment? Thank you very much!
Hi guys! My husband was looking around for information and he found about this, we were wondering if this is a common treatment? Thank you very much!
krikri1989ho
in
CLL Support
3 years ago
Covid-19 vaccine and getting pregnant
I booked my first dose of Covid-19 vaccine on Thursday. Even if I stopped the Clomid treatment this month I ovulated, which was a nice surprise. We are having timed sex intercourse. Is it safe to have the vaccine on Thursday? I will be on 5 days post ovulation. I will start ivf treatment in July, is
I booked my first dose of Covid-19 vaccine on Thursday. Even if I stopped the Clomid treatment this month I ovulated, which was a nice surprise. We are having timed sex intercourse. Is it safe to have the vaccine on Thursday? I will be on 5 days post ovulation. I will start ivf treatment in July, is
FrancyItaly
in
Fertility Network UK
3 years ago
Vaccine efficacy for COPD and immune compromised people
Hi everyone. Have any of you had any discussions with your medical team with respect to the efficacy of the Covid vaccines for people with compromised immune systems and COPD. I have COPD as well as having a stem cell transplant due to multiple myeloma. I have been in remission for 8 years but it is
Hi everyone. Have any of you had any discussions with your medical team with respect to the efficacy of the Covid vaccines for people with compromised immune systems and COPD. I have COPD as well as having a stem cell transplant due to multiple myeloma. I have been in remission for 8 years but it is
macnsyl
in
Lung Conditions Community Forum
3 years ago
Hi, is it possible to still have PA even though my parietal cell and intrinsic factor antibody are negative and my b12 is low?
Low b12 and negative parietal cell antibody and intrinsic factor. Can it still be pernicious anaemia
Low b12 and negative parietal cell antibody and intrinsic factor. Can it still be pernicious anaemia
Rocky213
in
Pernicious Anaemia Society
3 years ago
Hyper mobility tips
Hi everyone I hope you’re all well I suffer from fibro and hyper mobility and all my joints are hugely affected. I am really struggling with pain management especially with my new job. My employer is not supportive or understanding and I am not sure how long I can bare the pain and lack of support
Hi everyone I hope you’re all well I suffer from fibro and hyper mobility and all my joints are hugely affected. I am really struggling with pain management especially with my new job. My employer is not supportive or understanding and I am not sure how long I can bare the pain and lack of support
egm123
in
Ehlers-Danlos Support UK
3 years ago
Lactulose... Ugh! Please help
So I started taking Lactulose yesterday again. Took it a long time ago with no problems I can remember. 1Tbs 2x a day. Now... 2Tbs 3x a day. I took the first 2Tbs and thought I would die from cramps and gas and then the runs. Drank water like a fish and still awoke dehydrated. Today I am doing 1Tbs 3x
So I started taking Lactulose yesterday again. Took it a long time ago with no problems I can remember. 1Tbs 2x a day. Now... 2Tbs 3x a day. I took the first 2Tbs and thought I would die from cramps and gas and then the runs. Drank water like a fish and still awoke dehydrated. Today I am doing 1Tbs 3x
FLgirl0722
in
British Liver Trust
3 years ago
Introduction of myself, PMF, from China
Hi, I'm Qi, from China, I'm 34 years old this year. I confirmed PMF in 2017. At that time, the splenomegaly was high, but it was not very high, and it was not so high all the time. These symptoms began to happen to me one after another as early as 2013. JAK2V617F gene mutation, there is only one mutation
Hi, I'm Qi, from China, I'm 34 years old this year. I confirmed PMF in 2017. At that time, the splenomegaly was high, but it was not very high, and it was not so high all the time. These symptoms began to happen to me one after another as early as 2013. JAK2V617F gene mutation, there is only one mutation
merlisa
in
MPN Voice
3 years ago
Continuation of Tocilizumab treatment in UK needed- Help or advice needed please.
I know not many people with LVV/ GCA in the UK are being treated with Tocilizumab ( only 250 according to NICE literature) but in the absence of any advice or help from my Rheumatology consultant, I am hoping someone on this forum could advise me. NICE still hasn’t rethought it’s advice
I know not many people with LVV/ GCA in the UK are being treated with Tocilizumab ( only 250 according to NICE literature) but in the absence of any advice or help from my Rheumatology consultant, I am hoping someone on this forum could advise me. NICE still hasn’t rethought it’s advice
Suzita76
in
PMRGCAuk
3 years ago
Recently diagnosed with MF
Hi Recently been diagnosed with MF at the age of 53, and the consultant at Guy's has proposed stem cell transplant later this year, has anyone had this treatment and if so any suggestions? I have a potential sibling match which is currently being investigated. Given the recent diagnosis still taking
Hi Recently been diagnosed with MF at the age of 53, and the consultant at Guy's has proposed stem cell transplant later this year, has anyone had this treatment and if so any suggestions? I have a potential sibling match which is currently being investigated. Given the recent diagnosis still taking
67Red
in
MPN Voice
3 years ago
Tocilizumab
If, as I understand it, NHS England only funds this drug for one year per individual then I will reach the end of my allocation in late July. It has taken months on this drug to cover the reduction in Prednisolone and I am now down to my lowest level ever. My Ophthalmologist is also discussing reducing
If, as I understand it, NHS England only funds this drug for one year per individual then I will reach the end of my allocation in late July. It has taken months on this drug to cover the reduction in Prednisolone and I am now down to my lowest level ever. My Ophthalmologist is also discussing reducing
AncientMariner
in
PMRGCAuk
3 years ago
A further update on the old taper journey ...
Hello again friends on this long and treacherous journey, I am reporting back with some good news, yay! While I have remained on the three weekly (rather than weekly or fortnightly) tocilizumab routine, my inflammation has remained under control, so far. I have just moved to 1.75mgs pred on my cautious
Hello again friends on this long and treacherous journey, I am reporting back with some good news, yay! While I have remained on the three weekly (rather than weekly or fortnightly) tocilizumab routine, my inflammation has remained under control, so far. I have just moved to 1.75mgs pred on my cautious
LemonZest11
in
PMRGCAuk
3 years ago
Surely this can't be right
Hello I am currently taking clonazepam half a tablet every other night as my GP was concerned about the addictive nature of the drug. It does help a little but still up every night 2/3 times but managing to get about 5/6 hrs which is a lot better than I've had at other times. I had a private neurologist
Hello I am currently taking clonazepam half a tablet every other night as my GP was concerned about the addictive nature of the drug. It does help a little but still up every night 2/3 times but managing to get about 5/6 hrs which is a lot better than I've had at other times. I had a private neurologist
Operababe
in
Restless Legs Syndrome
3 years ago
Negative HPT after 40.88 Beta hcg is it negative ?
Hi somebody please suggest me i had beta hcg 40.88 2 days before and test need to be repeated after 3 days as per ivf lab.Today i did UPT but it was negative can i consider it a negative pregnancy?
Hi somebody please suggest me i had beta hcg 40.88 2 days before and test need to be repeated after 3 days as per ivf lab.Today i did UPT but it was negative can i consider it a negative pregnancy?
Arya1234
in
Fertility Network UK
3 years ago
Using Kratom to come off pramipexole
I’ve been taking Pramipexole now for 13 years, two 0.088 a day. I’ve just ordered red vein kratom, which I realise can be addictive, but was wondering if anyone has used this to come off Pramipexole successfully? My last attempt was cold turkey........hellish and I know that the tramadol I was prescribed
I’ve been taking Pramipexole now for 13 years, two 0.088 a day. I’ve just ordered red vein kratom, which I realise can be addictive, but was wondering if anyone has used this to come off Pramipexole successfully? My last attempt was cold turkey........hellish and I know that the tramadol I was prescribed
Deeperside
in
Restless Legs Syndrome
3 years ago
Advice - NK cells
Hi fellow warriors, I hope you’re all okay. I haven’t logged in for a number of months as I needed a break from all things IVF after our two failed cycles last year. I hope there have been lots more BFPs and happy news for you all. We are currently planning our next cycle and potentially my last cycle
Hi fellow warriors, I hope you’re all okay. I haven’t logged in for a number of months as I needed a break from all things IVF after our two failed cycles last year. I hope there have been lots more BFPs and happy news for you all. We are currently planning our next cycle and potentially my last cycle
Kat_15
in
Fertility Network UK
3 years ago
How much T3 should I add?
Please could somebody help me work out how much T4 to reduce in order to make room for T3? After another 8 weeks at a reduced levo amount of 125/100/100/125/100/100/125 my results as follows: CRP HS <0.3m/l (range 0 - 5) Ferritin 82 ug/L (range 13 - 150) Folate - serum >20.0 ug/L (range >2.9) B12 Active
Please could somebody help me work out how much T4 to reduce in order to make room for T3? After another 8 weeks at a reduced levo amount of 125/100/100/125/100/100/125 my results as follows: CRP HS <0.3m/l (range 0 - 5) Ferritin 82 ug/L (range 13 - 150) Folate - serum >20.0 ug/L (range >2.9) B12 Active
AleB
in
Thyroid UK
3 years ago
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