lasting worsening after immunoglobulines (gammanorm)

[aurel]

I started taking subcutaneous immunoglobulines (gammanorm) in spring of 2020 (prescribed by KDM).

Before the treatment, I was able to work 30h per week and go for 30 minute walks daily.

I did the treatment for 6 weeks (one injection per week) and felt a continuous deterioration. At first, I thought it would only be transient and thus ignored it. But after 6 weeks I stopped treatment.
I never recovered from it.

Since the end of the treatment, I am only able to work for 1-2 hours a day (in 15 min intervals) and can walk no further than roughly 100 metres.

I also aqcuired some new symptoms: After exertion, I feel incredible weakness and emptiness in my arms and legs. Breathing becomes too strenuous and my heart feels like it's beeing stabbed. Before, I felt exertion - both physical and mental - more in my brain (tiredness, brainfog). Now, it is also in my body.
I also have constantly inflamed airways and larynx. Consequently, I can only talk very little. If i talk too much, then I crash.

Question: Has anyone had a similar experience (i.e. lasting deterioration from immunoglobulines)? Any idea what might have happened and what I can do to reverse it?

Thanks,
Aurel

 

[Pyrrhus]

I have heard of other people worsening after IVIG treatment, but I don't know if their worsening was temporary or if it lasted a long time...

 

[Alenka]

@aurel

Are you feeling any better now? I have just received Gammanorm prescription from KDM today (on my request) and now I'm scared to try it.

 

[aurel]

Nope, I'm still the same. I have also asked another ME/CFS Doc who uses IVIG a lot and he said that he has never seen a reaction like mine. So I guess that my negative experience was pretty unique. I seems to help quite a lot of people.
So I wouldn't worry too much if I were you. Just watch your reaction closely and if you start declining then just stop. My mistake was that I stopped way too late, because I thought that my reaction would surely only be temporary.

 

[bread.]

Nope, I'm still the same. I have also asked another ME/CFS Doc who uses IVIG a lot and he said that he has never seen a reaction like mine. So I guess that my negative experience was pretty unique. I seems to help quite a lot of people.
So I wouldn't worry too much if I were you. Just watch your reaction closely and if you start declining then just stop. My mistake was that I stopped way too late, because I thought that my reaction would surely only be temporary.

What was your dose? Thank you!

 

[Alenka]

Nope, I'm still the same. I have also asked another ME/CFS Doc who uses IVIG a lot and he said that he has never seen a reaction like mine. So I guess that my negative experience was pretty unique. I seems to help quite a lot of people.
So I wouldn't worry too much if I were you. Just watch your reaction closely and if you start declining then just stop. My mistake was that I stopped way too late, because I thought that my reaction would surely only be temporary.

Thank you very much for your reply! I made the same mistake when chelating which is what triggered my CFS. Paid a high price for not listening to my body!

 

[GlassCannonLife]

I started taking subcutaneous immunoglobulines (gammanorm) in spring of 2020 (prescribed by KDM).

Before the treatment, I was able to work 30h per week and go for 30 minute walks daily.

I did the treatment for 6 weeks (one injection per week) and felt a continuous deterioration. At first, I thought it would only be transient and thus ignored it. But after 6 weeks I stopped treatment.
I never recovered from it.

Since the end of the treatment, I am only able to work for 1-2 hours a day (in 15 min intervals) and can walk no further than roughly 100 metres.

I also aqcuired some new symptoms: After exertion, I feel incredible weakness and emptiness in my arms and legs. Breathing becomes too strenuous and my heart feels like it's beeing stabbed. Before, I felt exertion - both physical and mental - more in my brain (tiredness, brainfog). Now, it is also in my body.
I also have constantly inflamed airways and larynx. Consequently, I can only talk very little. If i talk too much, then I crash.

Question: Has anyone had a similar experience (i.e. lasting deterioration from immunoglobulines)? Any idea what might have happened and what I can do to reverse it?

Thanks,
Aurel

This is so shit I'm so sorry.. Did KDM apologise at least? What a terrible loss to have to go through. This illness is a nightmarish joke.

 

[aurel]

What was your dose? Thank you!

One bottle a week. I think that's 6ml of 165mcg/ml

 

[aurel]

This is so shit I'm so sorry.. Did KDM apologise at least? What a terrible loss to have to go through. This illness is a nightmarish joke.

nope, didn't apologise. I think that he didn't really handle the situation well, but he is not really known to be a great communicator and people person
I'm not mad at him though. This is a drug that lot's of CFS docs use with great success. I just got unlucky and figured it out too slowly...

 

[GlassCannonLife]

nope, didn't apologise. I think that he didn't really handle the situation well, but he is not really known to be a great communicator and people person
I'm not mad at him though. This is a drug that lot's of CFS docs use with great success. I just got unlucky and figured it out too slowly...

That's a great attitude to have. I hope things improve for you

 

[cfs since 1998]

I also aqcuired some new symptoms: After exertion, I feel incredible weakness and emptiness in my arms and legs. Breathing becomes too strenuous and my heart feels like it's beeing stabbed. Before, I felt exertion - both physical and mental - more in my brain (tiredness, brainfog). Now, it is also in my body.
I also have constantly inflamed airways and larynx. Consequently, I can only talk very little. If i talk too much, then I crash.

Question: Has anyone had a similar experience (i.e. lasting deterioration from immunoglobulines)? Any idea what might have happened and what I can do to reverse it?

Your new symptoms are consistent with dysautonomia and peripheral neuropathy. I developed the same symptoms after taking valayclovir. Paradoxically IVIG is sometimes used to treat these conditions. There's a lot of paradoxes surrounding CFS

I wonder if your response is related to the dosage and the fact you received it subcutaneously. Lower doses are used to fight infections while higher doses are used to suppress the immune system.

Here is a case where IVIG made an infection worse in a CFS patient:

https://pubmed.ncbi.nlm.nih.gov/25542471/
We describe a case of chronic fatigue syndrome (CFS) associated to Parvovirus B19 infection where administration of intravenous immunoglobulins (IVIG), previously reported as effective, induced a paradoxical clinical response and increased viral replication. The indication of IVIG administration in the treatment of Parvovirus B19-associated CFS should be carefully reconsidered.