Snowflake

New Member
Hello everyone,
I have drug induced CFS. I write here because it might be of interest to researchers.
I am a 50 years old male (God! already 50..). I have severe psoriasis for over 20 years and arthritis for a couple of years. For 12 years now I take biological treatment - Humira, Enbrel, Stelara, and now Cosentyx.
My symptoms include severe muscle weakness - to the point that I have trouble sitting up straight for more than two hours, let alone walk much - and cognitive weakness - mainly concentration problems but also memory problems. I guess that’s all adds up to being a zombie..
But the most interesting symptom of all is that physical exercise makes those symptoms MUCH worse. I can run for a few minutes, but if I do that then about a day or two later I get extremely tired for a week or two. This symptom is the most unique; no doctor has heard of it.
Now here is the nice thing. When I stop taking the biologics the symptoms go away. It takes four months for the drug to get out of the system and my mind is sharp again, and I can run and swim without any problem. Well, except for severe psoriasis and arthritis...
I’m quite sure that CFS has to do with those interleukins that the new bio drugs are manipulating. I hope the exact mechanism is found soon. If any researcher gets some new ideas from my story then I’m happy.
Best wishes to all of you who cope with CFS.
 

Apo Sci

Well-Known Member
Well if it's drug induced then it should go away if you stop the drug. Never heard of a ME side effect from any treatment.
 

Edie

Active Member
Hi Snowflake. Have you ever thought of going to a Naturopath Doctor (physician) to see why you have Psoriasis & arthritis? I've gotten most of my help from my ND. They are trained to look for the root of problems, not just put a drug on them just to manage the symptoms. I had psoriasis too and as he corrected a lot of my health problems, it just disappeared.
 

Snowflake

New Member
Hi Edie, I’ve tried ND among other treatments, including nutrition and counseling. I agree that dealing with psoriasis requires a broad view on all life aspects. Psoriasis is a tricky condition; it can come and go without apparent reason. Glad to hear it worked for you.
 

BobbyPeru

New Member
This video may be of interest as it discusses IL-10 and Il-17. Cosentyx, for example, inhibits IL-17.
Altered T-Cells Doctors Liisa Selin and Anna Gil
 

buckey

Member
I've always wondered if tetracycline for acne caused my ME.
I was on huge bottles of tetra.for 1.5 yrs without a break.i was 16 at the time.it never did take my acne away.
What did take my acne away ,was, sitting in direct sunlight with my shirt off. sun for only one week on that area!!! You see, I had severe acne on my shoulders
 

LA2SD

Active Member
I've always wondered if tetracycline for acne caused my ME.
I was on huge bottles of tetra.for 1.5 yrs without a break.i was 16 at the time.it never did take my acne away.
What did take my acne away ,was, sitting in direct sunlight with my shirt off. sun for only one week on that area!!! You see, I had severe acne on my shoulders
Darn, Buckey. Just seeing what others have reported about antibiotics as my doc wants to prescribe some. Tetracycline is one of the possibilities. After taking it is when your ME started? What other antibiotics should we stay away from? I know the Cipro one is very dangerous as it gave my neighbor nerve damage to where he could no longer walk. Another one being considered is Trimethoprim/Sulfa.
 

Oboe

Member
Darn, Buckey. Just seeing what others have reported about antibiotics as my doc wants to prescribe some. Tetracycline is one of the possibilities. After taking it is when your ME started? What other antibiotics should we stay away from? I know the Cipro one is very dangerous as it gave my neighbor nerve damage to where he could no longer walk. Another one being considered is Trimethoprim/Sulfa.
I have hEDS as well. Cipro did me in.
I think it was a Tdap innoculation ( tetanus aspect) caused the
ME with me
I was not great before since chemo at 43 but, after the innoculation I didn't ask for I went down fast. 13 years ago.
The only help Ive had has been at center for Complex Diesese.
I can hardly afford it on SSI .
 

Oboe

Member
Hello everyone,
I have drug induced CFS. I write here because it might be of interest to researchers.
I am a 50 years old male (God! already 50..). I have severe psoriasis for over 20 years and arthritis for a couple of years. For 12 years now I take biological treatment - Humira, Enbrel, Stelara, and now Cosentyx.
My symptoms include severe muscle weakness - to the point that I have trouble sitting up straight for more than two hours, let alone walk much - and cognitive weakness - mainly concentration problems but also memory problems. I guess that’s all adds up to being a zombie..
But the most interesting symptom of all is that physical exercise makes those symptoms MUCH worse. I can run for a few minutes, but if I do that then about a day or two later I get extremely tired for a week or two. This symptom is the most unique; no doctor has heard of it.
Now here is the nice thing. When I stop taking the biologics the symptoms go away. It takes four months for the drug to get out of the system and my mind is sharp again, and I can run and swim without any problem. Well, except for severe psoriasis and arthritis...
I’m quite sure that CFS has to do with those interleukins that the new bio drugs are manipulating. I hope the exact mechanism is found soon. If any researcher gets some new ideas from my story then I’m happy.
Best wishes to all of you who cope with CFS.
Have you had a pharmogentic test to see how you process and metabolize meds?
Helped me

I'm missing the CYP2D6 allee that processes over 40 types of medication.

Explained alot since 3/4 of what I'd been prescribed over the years I wasn't able to process

Mast cell activation reaction?
 

LA2SD

Active Member
I have hEDS as well. Cipro did me in.
I think it was a Tdap innoculation ( tetanus aspect) caused the
ME with me
I was not great before since chemo at 43 but, after the innoculation I didn't ask for I went down fast. 13 years ago.
The only help Ive had has been at center for Complex Diesese.
I can hardly afford it on SSI .

Hello again Oboe!

Wow, ok, so first you had cancer then chemo, and then around that time they added a tetanus shot and then the ME began?

And then after that they gave you Cipro?

And can you believe Cipro IS the one my doc prescribed for me! I skipped it at the pharmacy last night. I will tell her it doesn't go well with ME/CFS peeps. She will respect it, but I did pick up Fluconazole (Diflucan) that she prescribed for the fungal stuff last night. It's only 3 pills over 9 days and I plan to start tonight unless anyone here has any objections..? ;)

The Cipro was intended to kill a bacteria called Calibacter Freundii found in my stool. In the meantime, I have Berberine and may order Uva-ursi to help keep it at bay (herbal stuffs).
 

LA2SD

Active Member
Have you had a pharmogentic test to see how you process and metabolize meds?
Helped me

I'm missing the CYP2D6 allee that processes over 40 types of medication.

Explained alot since 3/4 of what I'd been prescribed over the years I wasn't able to process

Mast cell activation reaction?

No, I don't think I've done any such test. Do you know the literal test and lab that you found helpful? My docs had me on the anti-depressant Bupropion (Wellbutrin), but I found a totally undigested pill in my stool! Could this be what's potentially clogging my gallbladder? I did find I'm not digesting fats well at all per stool testing, and thermal imaging showed inflammation around my gallbladder. I'm going to see first if my VA docs can look at my gallbladder and then after that try a cleanse/flush. I do wonder how much it can affect us if we're not gaining energy from healthy fats we need for the brain.

And I'm only starting to hear about the mast cell activation stuff from you guys for the first time. I need to look into it.

Also, I'm glad you're at least getting SSI. Do they honor all of your diagnoses? My issues have continued so long that I need to try again to apply for SSDI, but I need to learn how to do it right this time, because they've denied me twice already. (I began applying in 2006 when I first had CFS).
 

cordkel

New Member
Hello everyone,
I have drug induced CFS. I write here because it might be of interest to researchers.
I am a 50 years old male (God! already 50..). I have severe psoriasis for over 20 years and arthritis for a couple of years. For 12 years now I take biological treatment - Humira, Enbrel, Stelara, and now Cosentyx.
My symptoms include severe muscle weakness - to the point that I have trouble sitting up straight for more than two hours, let alone walk much - and cognitive weakness - mainly concentration problems but also memory problems. I guess that’s all adds up to being a zombie..
But the most interesting symptom of all is that physical exercise makes those symptoms MUCH worse. I can run for a few minutes, but if I do that then about a day or two later I get extremely tired for a week or two. This symptom is the most unique; no doctor has heard of it.
Now here is the nice thing. When I stop taking the biologics the symptoms go away. It takes four months for the drug to get out of the system and my mind is sharp again, and I can run and swim without any problem. Well, except for severe psoriasis and arthritis...
I’m quite sure that CFS has to do with those interleukins that the new bio drugs are manipulating. I hope the exact mechanism is found soon. If any researcher gets some new ideas from my story then I’m happy.
Best wishes to all of you who cope with CFS.
My severe ME/CFS, SEID, autonomic dysfunction (whatever you want to call it!) was a direct result the 11 months of trial HepC treatment of interferon, ribavirin and bocefivir that I did in 2008-09. There is no question that toxic pharmaceuticals have the potential to cause this disease.
 

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