From very severe to moderate in two months

[Martin aka paused||M.E.]

Wondering why you only take 100mg Celebrex?


Do you have huge IL-1B spikes?
I was planning to use it for surpressing my Interleukin 1 Beta sideffects.
Studies propose 600-800mg effectively.

See:
https://www.ors.org/Transactions/50/0942.pdf

I might upper the dose... We wanted to start carefully because Abilify is a dangerous drug itself

 

[choochoo]

If you are improving without increasing the dose of Celebrex I would stay as you are. There is a risk of internal bleeding and ulcerative colitis from Celebrex ( both happened to me ).

 

[Martin aka paused||M.E.]

If you are improving without increasing the dose of Celebrex I would stay as you are. There is a risk of internal bleeding and ulcerative colitis from Celebrex ( both happened to me ).

That’s not funny. Sorry you had to suffer from it

 

[mitoMAN]

If you are improving without increasing the dose of Celebrex I would stay as you are. There is a risk of internal bleeding and ulcerative colitis from Celebrex ( both happened to me ).

How fast did these symptoms appear and what dosages were you taking if I may ask?

 

[andyguitar]

I wonder if @Howard has been following this thread.

 

[choochoo]

That’s not funny. Sorry you had to suffer from it

It has settled down now I'm off the Celebrex. Thats why its important not to go too high on the dosage. In other words keep the dose low and steady once a day. Otherwise, you may have to come off it altogether like happened to me.

 

[leokitten]

Hi @Martin aka paused||M.E. how long have you had ME? I read for the last 2 to 2 1/2 years you’ve been very severe until this treatment, what severity level were you before being severe (from one day to the next)?

 

[leokitten]

Also @Martin aka paused||M.E. did you feel that there was a significant difference in symptom relief between Abilify 2mg and 4 mg per day?

 

[leokitten]

Do you also know, or think you know, what caused you to go from the severity level you were to becoming very severe in a day?

 

[Martin aka paused||M.E.]

Hi @Martin aka paused||M.E. how long have you had ME? I read for the last 2 to 2 1/2 years you’ve been very severe until this treatment, what severity level were you before being severe (from one day to the next)?

I’m ill since 2013 (very mild)... 2017: moderate, 2018 very very severe after overdoing it ... summer 2020 severe, now moderate-severe.. getting better every week

 

[choochoo]

Fabulous to hear Martin. May your health continue to improve

 

[leokitten]

It has settled down now I'm off the Celebrex. Thats why its important not to go too high on the dosage. In other words keep the dose low and steady once a day. Otherwise, you may have to come off it altogether like happened to me.

Etoricoxib (Arcoxia) has a far lower risk of GI issues compared to celecoxib (over 100x COX-2 selectivity vs 10-20x), have you given any thought of combining this instead?

 

[leokitten]

I’m ill since 2013 (very mild)... 2017: moderate, 2018 very very severe after overdoing it ... summer 2020 severe, now moderate-severe.. getting better every week

We’ve been sick a similar amount of time. For me it’s been 2013 mild, 2016 mild-to-moderate, 2018 moderate, keto diet which temp brought me back to mild-to-moderate, 2019 moderate, since summer 2020 bedridden moderate-to-severe.

I know you said you wouldn’t do Abilify if you were moderate or mild-to-moderate, but from my experience this disease/disorder is so bad and disabling at every severity level except the most very mild that I wouldn’t be surprised if everyone trials it, especially as you can see in your disease course and mine (and many others) that without any effective treatment many of us deteriorate and progress from mild and moderate severity levels to worse.

When I had “mild” ME I lost for sure at least 50% of my exertion capacity, had to give up all sports, exercise, hobbies, friends, just to have a fraction of the energy I needed to hold on to a job which I couldn’t do without major accommodations (telework 1/2 week) and still that was way too much exertion that symptoms built up every week until I crashed once or twice a week. Simply pure hell and that’s “mild” ME. So, probably same as you, have been forced to do everything possible to insanely overexert to cling on to work for financial reasons but it’s been causing my deterioration the entire time until now so disabled can’t work anymore. I would’ve done Abilify at mild ME.

I believe one of the driving reasons some people might be against taking the small risk of trialing low dose Abilify is because they have a stable disease and most importantly financial situation.

 

[Martin aka paused||M.E.]

We’ve been sick a similar amount of time. For me it’s been 2013 mild, 2016 mild-to-moderate, 2018 moderate, keto diet which temp brought me back to mild-to-moderate, 2019 moderate, since summer 2020 bedridden moderate-to-severe.

I know you said you wouldn’t do Abilify if you were moderate or mild-to-moderate, but from my experience this disease/disorder is so bad and disabling at every severity level except the most very mild that I wouldn’t be surprised if everyone trials it, especially as you can see in your disease course and mine (and many others) that without any effective treatment many of us deteriorate and progress from mild and moderate severity levels to worse.

When I had “mild” ME I lost for sure 50% of my exertion capacity, had to give up all sports, exercise, hobbies, friends, just to have a fraction of the energy I needed to hold on to a job which I couldn’t do without major accommodations (telework 1/2 week) and still that was way too much exertion that symptoms built up every week until I crashed once or twice a week. Simply pure hell and that’s “mild” ME. So, probably same as you, have been forced to do everything possible to insanely overexert to cling on to work for financial reasons but it’s been causing my deterioration the entire time until now so disabled can’t work anymore. I would’ve done Abilify at mild ME.

I believe one of the driving reasons some people might be against taking the small risk of trialing low dose Abilify is because they have a stable disease and most importantly financial situation.

You have to understand that I have been heavily criticised by two users the last time. And in IG there were a few who said things like "I hope you will get worse then you know how stupid you are". So I decided not to say to anyone who isn’t in absolute need for it to take it.
But please remind: there is a risk and it’s not "small"

 

[leokitten]

But please remind: there is a risk and it’s not "small"

Without data to show otherwise one cannot make the statement about how “not small” the risk of TD is at the very low dosages used in ME.

The evidence that I have searched for and found, when Abilify is given at the antidepressant augmentation dosage range of 5-10mg per day, is the incidence of TD is <0.5%, and most of those cases were older people (who are always at a higher risk of TD) or people taking other drugs which affected Abilify metabolism therefore dramatically increasing the concentration of drug without them realizing (as if they were taking a higher dosage).

 

[Judee]

You have to understand that I have been heavily criticised by two users the last time. And in IG there were a few who said things like "I hope you will get worse then you know how stupid you are".

@Martin aka paused||M.E., that makes me sad. I'm sorry anyone treated you that way. You're an inspiration to me and I love hearing when you have improvements. I get so excited for you.

Plus people here even get to learn from the times you have set backs even though we feel badly for you at those times so please do not be discouraged by the naysayers.

Sending you a cyber hug.

 

[bensmith]

Man that is really crazy. Glad you are improving.

 

[leokitten]

@Martin aka paused||M.E. do you still crash if you overdo it?

What I find really inspiring and intriguing is that you said you get no more mental fatigue, cognitive problems, or PEM from mental exertion? And that (likely due to these improvements) you are working again even though physically you are still very limited, is this the case?

It’s amazing actually as I believe all moderate level ME patients are not able to do even sedentary work at all as this causes crashes and severe PEM from mental exertion (it does for me now that I’ve deteriorated to this level). I think the cognitive and neurological impairments are even worse than the physical!

 

[bensmith]

@leokitten wow i had not read this. That is crazy.

i am with you in that my neuro issues are worse than physical, in that i cant distract myself from my situation very well or at all. This is incredible paused was able to stop this.

that would be such a life improvement to see mental pem stopped! Wow.

@Martin aka paused||M.E. how did you overdo it to very very severe if you domt mind me asking. Sorry trolls are mean. I know thar sucks.

happy for you!

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E. do you still crash if you overdo it?

What I find really inspiring and intriguing is that you said you get no more mental fatigue, cognitive problems, or PEM from mental exertion? And that (likely due to these improvements) you are working again even though physically you are still very limited, is this the case?

It’s amazing actually as I believe all moderate level ME patients are not able to do even sedentary work at all as this causes crashes and severe PEM from mental exertion (it does for me now that I’ve deteriorated to this level). I think the cognitive and neurological impairments are even worse than the physical!

I can work for 8 hrs + without crashing