Running out of treatment options. What next?

[dreamydays]

https://www.rinvoq.com/

rinvoq treats fatigue in RA

See my experience on Tofacitinib hereN
https://forums.phoenixrising.me/threads/tofacitinib-2-month-trial.80915/

People talked about JAK inhibitors before but I didn't get much interest in my trial. I do trials do help me obviously, but I genuinely think I am also taking a risk taking new unsupervised trials to help all of us out of this hell. I also posted a few other trials and a way I get of going from bedbound to housebound and physically doing things and didn't get much response. Well its good to see people talking about medication rather than taking garlic or whatever

Upadacitinib blocks more JAK pathways, but i don't think it will be easy to get and at the time i looked into JAK enzymes and i'm not sure if blocking. more will chsnge anything. But I would try it at the right price because I am a guinea pig!

Not sure if its been mentioned but I stopped NMN 1g for NAD+ subcutaneous injections and the NAD+ is so much better, You have to prepare it properly though but i'm sure there is a guide some where. nadlab uk sell alive by nature sublingual nad+ which you can use under your tongue but you struggle to absorb enough that way but there is no additives so you could use that so subq injections. @mitoMAN put me on to this but he gets more out of NADH. NAD+ in theory would work better in terms of its actions but NADH will get recycled into NAD+ eventually. My injections cost the same as the NMN or less if you respond to a lower lose

 

[dreamydays]

Curcumin has no effect on me, plus you need piperine to absorb more and that just fucks up your hormones and half the drugs in the world. only herbal type that work as far as i've tried are holy basil 5g organic powder in water with sweeteners to cover the bitter taste (you could also use d-ribose if it works for you) and Oxymatrine which their are threads on. To be fair neem is good as an oral antifungal which can be useful.

 

[Wishful]

because I am a guinea pig!

Do you have a special keyboard for your little paws?

Sometimes I like to imagine that the people posting messages are aliens or other sentient animals.

 

[mitoMAN]

Curcumin has no effect on me, plus you need piperine to absorb more and that just fucks up your hormones and half the drugs in the world. only herbal type that work as far as i've tried are holy basil 5g organic powder in water with sweeteners to cover the bitter taste (you could also use d-ribose if it works for you) and Oxymatrine which their are threads on. To be fair neem is good as an oral antifungal which can be useful.

I ordered liquid nano curcumin for injection purpose along with water solube Q10. Will keep you posted mate.

Also @dreamydays you could try injectible NMN and NR. I have both sitting in my freezer - I noticed improvment on NMN for a few days then had a crash. So I only tried NMN injections from 300-600mg per 5 days.

 

[bensmith]

@Canned there should be a new ampligen post, some of us are trying to buy it from a chinese lab. i saw you mentioned wanting to try it here.

 

[mitoMAN]

Just purchased it today! Hopefully receive it before christmas and send it to the lab early January @Ampligen!

 

[bensmith]

Ty mit very much!

 

[Viala]

Have you tried high dose iodine with selenium? Sherpa wrote here about it with good results.

 

[Waverunner]

Upadacitinib blocks more JAK pathways, but i don't think it will be easy to get and at the time i looked into JAK enzymes and i'm not sure if blocking. more will chsnge anything. But I would try it at the right price because I am a guinea pig!

Hi, I'm currently on Upadacitinib - only 5 days so far! - and it seems to increase fatigue significantly. Within a few hours after taking it, I get very sleepy (good when taken before going to bed) but it also increases fatigue during the daytime in my case.

In the studies for RA it reduces fatigue for many patients but their fatigue may have other causes that get targeted by this JAK inhibitor. In this early stage, I would say that it may not help with CFS but we will see how it works within a few weeks.

 

[lenora]

HI @Waverunner....At 75 yrs. I'm old enough to have been though many of the obvious treatments.

The side effects may wear off after 4-6 wks., I don't know. Some have left me totally exhausted and the more things we're on, the harder it is to figure out the cause.

I'm completely exhausted now....but is it constant visitors (day or weekend only) from the beginning of Sept., having our CA daughter here for a week at Thanksgiving, with family, followed by Xmas or meds? I don't know myself, just that this is taking a lot time to get over. Even my husband has many of the same issues. My gut tels me we're just exhausted and I know plenty of people suffer after the holidays. Don't get me wrong...our daughter and her family are an absolutely pleasure, as is our daughter and her family here. It's just that with talking comes exhaustion, followed by......and any number of problems.

So should you wait, stop or tell your doctor? I'm sorry, but the answer could be any one of those, but I'm sure you already know that. The worst thing we can do is try to too many new things together....that's just asking for confusion. Vacations of things like vitamins aren't such bad things either (and I do take them).

I wish I had some answer for you, but it's difficult. Perhaps someone else can help you. I hope so. Feel better. Yours, Lenora

 

[Waverunner]

Hi @lenora Thank you for your kind and wise reply. It's saddening to hear that despite these many and sometimes very expensive treatment options we still have not found something that works for most persons with CFS. Regarding Upadacitinib, I will try to take it but when the side effects get too strong or continue after a few weeks I will stop it completely. JAKs don't seem to be the origin of my symptoms then. My next appointment is in three weeks.

I also feel completely exhausted at the moment. A few months ago I was at 60-70% energy levels and even started to go to the gym again. One month ago I was at 40%, now I'm at 20 to 30%. It's really hard to go to work at the moment. The holidays may have contributed but the new treatment certainly plays an underlying role in the drop in energy levels.

And I fully agree that not taking too many things often is better than trying too many things at once. Overall I would say that most things I tried failed or even made it worse. This is also an interesting outcome because in other people supplements often have little effect at all.

Still, hanging in there. I hope you also recover some energy and get better soon.

Edit: Energy levels increased to about 50% but probably not because of the JAKi but because of some probiotic (VSL#3) I took. I feel like the microbiome is playing an important role as well.