pattismith
Senior Member
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I don't have POTS, I don't have severe dysautonomia, I can walk and work (my work place and my home are in the same place) as long as I lay down as much as possible, but it's a daily struggle.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Pulsed high dose methylprednisolone + inosine + inositol = cured?
- Thread starter pattismith
- Start date
I don't have POTS, I don't have severe dysautonomia, I can walk and work (my work place and my home are in the same place) as long as I lay down as much as possible, but it's a daily struggle.
Hd-x
Senior Member
- Messages
- 244
@pattismith
Besides PVC, energy level/brain fog/pain did you also had immunological problems like swollen lymph nodes, chronic infections, sore throat and so on? If so, did this also improve under Methylprednisolone?
How long do you plan to take Methylprednisolone - do you plan to take it permanently and if so, will you reduce the dosage to minimize unwanted long term steroid side effects?
I dropped in the meantime Klonopin and switched over to Phencarol + the mentioned supps + LD Ivabradine ,
with those stuff the heart problems are now fully gone since 2weeks. I am now planning the next steps to improve few things, but my endurance isnt good enough for any regular cycling as cardio training, so I am currently trying to train on a daily base a little bit on an E-MTB and it works good so far if I can adjust how much the electrical engine helps if you pedal. Thx. to the E-MTB I can now first time cycling in the forest and it seems I found after struggling so many years with CFS a new hobby that fits for my CFS.
Great to hear that you are further doing well.
Besides PVC, energy level/brain fog/pain did you also had immunological problems like swollen lymph nodes, chronic infections, sore throat and so on? If so, did this also improve under Methylprednisolone?
How long do you plan to take Methylprednisolone - do you plan to take it permanently and if so, will you reduce the dosage to minimize unwanted long term steroid side effects?
I dropped in the meantime Klonopin and switched over to Phencarol + the mentioned supps + LD Ivabradine ,
with those stuff the heart problems are now fully gone since 2weeks. I am now planning the next steps to improve few things, but my endurance isnt good enough for any regular cycling as cardio training, so I am currently trying to train on a daily base a little bit on an E-MTB and it works good so far if I can adjust how much the electrical engine helps if you pedal. Thx. to the E-MTB I can now first time cycling in the forest and it seems I found after struggling so many years with CFS a new hobby
that fits for my CFS.
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- Messages
- 11
I see how much you are takinf and am jelaus. At some point I develope dkidney problems and they just got worse and worse. i cant take almost anything, even in small doses without my kidney symptoms going thru the roof. I suppose its just how it is. For exmaple favipiravir only thing that helped me with calming down extreme MCAS. vascultis is toxic as hell .
Dude
Senior Member
- Messages
- 189
They are testing MethylPrednisolone for Long Covid in a Phase 2 Study at Charité Berlin
https://classic.clinicaltrials.gov/ct2/show/NCT05986422?cond=Post-COVID-19+Syndrome&cntry=DE&sfpd_s=07/31/2023&sfpd_d=14&sel_rss=new14
https://classic.clinicaltrials.gov/ct2/show/NCT05986422?cond=Post-COVID-19+Syndrome&cntry=DE&sfpd_s=07/31/2023&sfpd_d=14&sel_rss=new14
- Messages
- 11
That shows that covid wrecks people differently have seen tons of people who have got only temporarly relief from steroid use. I apersonally have benefitef from covid antivirals, works wonders for me , but they are too toxic since i have other serious conditions