I have positive autoimmunity markers, but are also prone to herpes and viral infections. Seeing the deterioration of Dafoe and someone else after receiving it scares me to take it.
My doctor, who was an AIDS doctor for 30 years before treating ME/CFS patients, tests for and treats all infections before putting patients on Rituximab. The risk with wiping out B cells which are antibodies, without killing off infections first, is that infections can potentially run amok without antibodies to fight them. He also has patients on intravenous immunoglobulins from donor antibodies for several months to help battle any infections before starting Rituximab.
Could plasmapheresis be effective?
In the short term, yes. It can wipe out "bad" antibodies temporarily, until they grow back, giving you an idea if Rituximab might be a better long-term solution. It is rarely done in the United States, But possible, and seems to be slightly more available in Europe. I am not sure about other countries, But I would assume most would have it at least somewhere.
The problem with this study is it was on a random group of ME/CFS patients, with a variety of conditions. Some may have been appropriately chosen and benefited while others likely did not have the appropriate characteristics to be prescribed Rituximab. As
@Judee says, everyone is different.
My doctor carefully selects patients for this treatment. I also went to a large medical research center to get a second opinion from another doctor who was an expert on both immunodeficiency and autoimmunity. We discussed the potential use of stem cells, Bortezimub and Rituximab, and he thought Rituximab was my best, least risky choice, and it just might work. He recommended the exact protocol my ME/CFS specialist had, which I went ahead with and benefited from.
In my opinion, if IVIG (removes infections) makes things better, Rituximab (reduces the immune system) will make things worse.
It may be your opinion, but IVIG provides antibodies. While they may help with infections, most of us are also given some sort of anti-infective, like an antiviral like Valtrex or Valcyte, antibiotics appropriate for the bacterial infection, an antifungal or a drug appropriate to kill a parasite. IVIG can also, over time, help with autoimmunity.
While Rituximab was originally approved for certain cancers, it is now approved for multiple types of autoimmunity. It kills off CD20 cells which create the autoimmune antibodies. If one has symptoms caused by "bad" antibodies, removing them can be helpful. The treatment is given multiple times, as the B cells mature and more are made, until they are all killed off. If you don't have this problem but you do have live infections, it could definitely be a problem, but that's why you check for and kill off Infections first. If the infections are gone and one has one or multiple types of bad antibodies, I can provide a great deal of relief.
Instead, try IVIG + Valtrex + Equilibrant for 4 months
If you have a problem that these will solve. I tried Valtex, which didn't do too much, but was more successful with Valcyte and antibiotics for the combination of infections I had.
As for Equilibrant, I found 2 sets of ingredients on the web:
1) astragalus root extract, shrubby sophora root extract, olive leaf extract, licorice root extract, and shittake mushroom extract.
2) active ingredients, plus Dextrose, Cellulose, Silicon Dioxide, Cellulose Gum, Magnesium Stearate (Vegetable Source), titanium Dioxide, Glycerine, Stearic Acid (Vegetable Source), Yellow #5, Blue #2 and Carnuba Wax
I'm not sure which is correct or if both are, but as someone with hyper POTS, licorice root could raise blood pressure alarmingly which could be a stroke risk, and dextrose is typically a corn derived sugar, and many of us are allergic to corn, which could lead to anaphylaxis.
It is always good to work with a doctor to identify ones exact issues and treat accordingly rather than just following someone's advice which could prove dangerous for someone else
At my local hospital I made positive beta 1 and 2 and alpha antibodies, achr positive antibodies, positive ANA antibodies and positive non-organic antibodies as well. I have low c3 and c4 add-ons.
Having a number of problematic antibodies may create a very good case for trying Rituximab. You would want to ensure you do not have any infections first, and if so, treat with IVIG or plasmapharesis, and then Rituximab if one or both are helpful. One would assume you are under the care of doctors who are well versed in the use of these tools, and it would be wise for a parent, partner, friend or caregiver to accompany you to do for appointments to understand the treatment and the potential for risks and benefits
Rituximab can be risky if you contract COVID while on it, because you lose your antibodies. I stopped it one infusion short of the original treatment plan because COVID broke out that month. I waited for over a year for my CD20 cells to grow back and start making antibodies.
I really do meet all the M.E. criteria. 😔
Sounds like you do, but you are lucky to have found some other, treatable diagnoses, and a doctor willing to treat you.
You need to fix these as soon as possible. Normally doctors would give a course of Prednisolone first, and only if that didn't work, Rituximab.
No, doctors would not normally prescribe prednisolone first. Each patient is unique and a lot is not normal about these situations.
It would be wise to find all antibodies you'll want to find first, before embarking in these treatments, as IVIG gives you don't antibodies, which makes testing your own antibodies useless and Rituximab wipes out antibody making nh B cells, and therefore, antibodies.
IVIG can be given along with treatments to fight infections. It is extremely prudent to identify all infections before Riruxumab. As doctors typically look for antibodies to infections, You would need to complete this set of tasks prior to starting IVIG. If it doesn't get done in time, then the ways you would look for any remaining infections are through PCR tests or culture.
Being prone to herpes and viral infections personally would scare me if going on rituximab. I have heard of several cfsers who have had issues with herpes infections get severe breakouts and deterioration in their overall wellbeing
This is why looking for and treating all herpesviruses and other infections with antivirals etc. BEFORE wiping out all your antibodies with Rituximab is an important step. It is also wise to support the body and immune processes with nutrients like antioxidants, methylation nutrients, amino acids, zinc, etc.
All i have written is out of my depth but stuff id ask a dr about.
That seems very true.
It is very wise to read all you can in any treatment, understand the ingredients, mechanism of action, type of patient it can be helped by, whether you fit this profile and discuss with those close to you and your doctor. Many treatments are reversible - some are not, so before doing them you must be assured of why you are doing them and what to expect. And if you don't understand them, that you find someone you trust who can help you understand what you are doing and why. Having a knowledgeable doctor is essential, and getting a second opinion, as I did, is wise.
Best wishes...
