There were some posts a few weeks ago on adverse immune responses after vaccination for people using interferons. I had this experience while transitioning form HU to Peg, firstly with a covid jab last December and secondly with the first of the Shingrix jabs in March, which triggered, at the very least, skin sarcoidosis, rheumatism in some knuckles, lung inflammation and a cough, which, I still have after 8 months. I'm sure I have the dry eye symptoms of Sjogrens. I described my symptoms, the timing of their appearance, how my meds are known to cause lung and immune issues, and my family history of autoimmune disorders to my Drs but it took a trip to the emergency room 5 months after the second jab before they would take me seriously. I now know I have underlying but still undefined autoimmune issues and a bunch of other stuff too numerous to list. If I had seen the posts from EPguy in time I would never have got the second jab. That ruined my life.
I finally got off HU about 5 weeks ago. The transition to Peg took more than a year. I am still on Peg but given the issues described above I am not sure I should be. That may change soon. My ET, which 2 years ago had grade 1 fibrosis, has progressed to myelofibrosis (grade 3-4). I don't know how fast these things progress but I am suspicious of the inflammation caused by the jabs. I'm still waiting on the cytogenetics results to know the full picture but I'll be talking to the stem cell transplant people soon to see what is now possible for me.
I looked into if maybe the immune responses and autoimmune stuff, with its increased inflammatory processes, could have impacted the progression to MF and found some articles that may be of interest to this community.
Fristly, the post "MF reverts to PV" from Manouche possibly could be explained by the article link in the post "Myelofibrosis: New Guidlines..." post from William-Indo. Table 2 in the link lists potential causes of marrow fibrosis and includes autoimmune and chronic inflammatory diseases, which are frequently treated with steroids (powerful anti-inflammatories.) Maybe the patient in this case was just unlucky enough to have two overlapping rare conditions. Those of us taking interferons are finding out that multiple rare events are not that rare.
There is a form of myelofibrosis that is called Autoimmune Myleofibrosis (AUMF) for which steroids are an effective treatment if the condition is identified and treated soon enough. Search pubmed for this and you will see many papers going back 20 years. For an introduction see the more general "Fibrosis and bone marrow: understanding causation and pathobiology".
Pubmed even throws up an article "Ruxolitnib: a new first line strategy for autoimmune myelofibrosis". The article is not free but if you click on the link then you can see the whole first page.
Due to its anti-inflammatory properties Rux is being trialed outside of the MPN world for treating inflammatory conditions.
Recently, Dr Fleischman at UC Irvine published "Myeloproliferative neoplasms - blurring the lines between cancer and chronic inflammatory disorder" in which is argued that the behavior of MPN is aligned with that of a chronic inflammatory disease. For more detail see:
The paperwork for Besremi lists "active serious or untreated autoimmune disease" as a contraindication whereas that for Peg says it is contraindicated for those with autoimmune hepatitis. Before starting Peg my Dr never checked for this stuff, or many of the other factors that the paperwork says should be checked. I'm guessing I'm not alone there.
The issues are complicated and overlapping. The safest course for any of us to get an MPN specialist for our Dr and do it asap.
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My unhappy and somewhat repetitive posts are hoped to keep my dire outcome as n=1.
I agree with you that IFN is a real dice roll for you at this point, its black box warning is real.
With your Sjogren's simmering that is scary, Sjo at its high end is an evil nasty experience. As a male especially you don't want to catch this one, we get it on avg worse than females. Getting a Sjo Dx can be hard, Drs resist it. Have you done the full immune panel (RF, SS-a etc) I got my Dx fast and easy. Sjo can be many of the autoimmune miseries combined all for the price of just one: lung, joint, neuro troubles being among them- systemic as they call it.
Your Dr should be considering Jak-i's for you, these are mild suppressants, why keep risking the sharp end of IFN. As you know there are now a few to choose from for MF.
You're right about the Jak-i's (and some related drugs) being trialed for autoimmunes. I can't say Rux has fixed anything for me there but maybe slowed my still fast descent.
I had the ANA tests and all were negative, but I didn't get them until about 5-6 months after the jab. They found ACE levels mildly elevated indicating sarcoidosis. I was scanned to see if that was in my organs but at that stage it was only observable in the lymph nodes associated with the lungs. The Drs thought the sarcoidosis was resolving slowly on its own so passed on giving me steroids to help clear up the lung stuff. It's all too little too late.
The transition from HU to Peg was going OK. It was intentionally very slow to make sure nothing went amiss. Both of the vax jabs disrupted that. Following the vax jabs my platelets rose by 250 for the first one and then 400 the second. I now think of these increases as reactive thrombocytosis but my Dr assumed the dosing of HU and Peg was not working and increased the Peg to compensate. At the time I didn't know better. Now I think that was a mistake. I don't think I will be on the interferon for long now, but not because of the Sjogrens, other immune issues or other side effects.
Since stopping the HU about 6 weeks ago my blood tests have been showing blasts. It was around then I started noticing the dry eyes. It is like stopping the HU took the brake of stuff that could go wrong. (HU has been used as a second line treatment for psoriasis, an autoimmune issue)
I had a bone marrow biopsy about 10 days ago and new results from that are coming in daily. Fibrosis at grade 3-4 had me thinking myelofibrosis but today I learned that they will want me to start on 5-azacytidine, which to me indicates myelodysplastic syndrome. I still don't have the gene mutation assessments and a full picture. I'm due to speak to my hematologist this Wed and with luck that should help clarify things. I'm also being set up to see the SCT people. I'm not sure how underlying immune issues will impact my eligibility for that, but they can't help.
You do have a lot of interacting things to consider. I'm in a version of the same, but my MPN is behaving ok so far.
Have you asked for more details on the possible MDS Dx?
On the immune tests, if you want to look deeper into the Sjogren's, you would get the SS-a SS-b tests. You can get a negative ANA (and negative everything) and still have Sjo. (vaguely like triple neg ET)
In my case I got the sensitive type ANA, it's neg, but SS-a is +. It means I have Ro52 type Sjo (vs the more common Ro60).
Yes there are many interacting factors. Understanding/managing them at the same time is what distinguishes experts from the rest.
I will find out more about the MDS on Wed. On Sunday I will get an ultrasound on liver and spleen, the size of which are supposed to have some prognostic value with or without transplant. Until they get the gene mutation assays back and can add those into the prognostic scoring algorithms it will be hard to chart a course.
Both the SS-a and SS-b tests were negative, as a were all the other ANA tests. They say I am <0.2 ABIndx and normal is <=0.9. I have no idea if these were the sensitive tests or not. Getting more tests done for the Sjogrens may shed some light on what's going on but there are times when it seems like the issue is more how to make the problem go away than to solve it. I'll copy your comment and forward it but getting anyone to listen and do the test is another matter. It may be like worrying about the paint job on the Titanic at this stage.
I will check out the link and see what I can suggest to the Drs.
My comment about making the problem go away was intended to mean that they would like me to give up and stop asking about it rather than them doing anything to identify and fix it.
Hi. This is a bit of a side shoot comment … I’m interested in the various conversations on this Forum that seem to be cropping up with increasingly regularity about interferons and autoimmune responses.
It wasn’t something that had ever been raised in past conversations with my haem team about interferons. (I’m actually on HU.)
But a few weeks back when I went to discuss in detail starting a trial which could involve an interferon or Rux I was told that one of the first pre trial tests was to check for any presence / susceptibilities for autoimmune diseases.
If those were found to be positive I would not be a candidate for interferons and therefore would not be eligible for the (randomised) trial. This was news to me!
Given the comments in the various threads here, I’m wondering whether there is growing evidence / awareness of the issues you have raised and a different approach to screening and prescribing is emerging.
I’m off to the MPN Voice Conference today, will be interesting to see what’s said on the issue (or I’ll ask!).
Interferons work very well for some patients and less well for others. A problematic group, presumably found through studies, trials and feed back for the real world, is that with autoimmune issues. These can be present and unknown to people so testing is important.
The people who run the trials want the most suitable patients. They are experts who know what they are doing. Once a drug goes out into the real world it is prescribed by Drs who often are not experts, not familiar with the finer points, may not know the contraindications and may not do the necessary tests to ensure proper use of the drug. It sounds inconceivable to patients (it did to me) but it happens all the time. The discussions in the forum reflect that.
By volunteering for the trial you dealt with experts and got to find out before anything could go wrong. There is a lesson there for all of us.
I’m up at Guy’s Hospital in London so pretty much the best MPN haem team. I’m going to investigate whether testing for autoimmune susceptibilities before prescribing interferons is now standard - at least in MPN expert centres.
As with everything it has its complexities - some of which you’ve highlighted. And there’s always a risk / benefit analysis to be done. But this sounds like an evolving area. And it would be naive to imagine that we do - or could - understand all the ramifications of a particular drug or therapy that it is approved for use. Knowledge and understanding is constantly evolving. You only have to look to MPNs to appreciate that.
The other issue, as you also highlight, is getting the latest thinking and practice out there, beyond the expert hubs. A perennial challenge!
I am on hydrea, and I have considered interferon at times; however, I am always deterred by one thing, the link with ‘autoimmune issues’.
For me, I am only too aware aware of the impact of autoimmune disease, as my husband has RA. The systemic involvement in autoimmune disease can be harrowing. This is why I don’t take this decision lightly.
My heart goes out to EPGuy, LongETinUS and others who are suffering the effects of autoimmune disease.
I would be very interested in any discussion on this topic today.
Wild horses couldn’t bring me to another vaccination for Covid. I know so many people who had severe reactions including myself. Two of them are friends had brain bleeding, and one was operated on immediately to get the brain out of his skull, who is my husband’s best friend in a cardiologist in one of the biggest hospitals in Europe. I forgot it happened at work and he got immediate attention or else we wouldn’t have had him today with us.
my best friend has a heart problem after her fourth jab and she would post herself every single time she got a job to support getting the job to help those who are susceptible. Her son at 25 has a heart problem. After the second jab. I was brainless half dead in my veins in my legs or leaky till I had proper therapy to get the spike proteins out of my body. My friends brother-in-law died the next day after the jab, a healthy 60 year old farmer. One of my neighbours, 42 with three young children was hospitalised for five weeks after the first jab. She said her whole body was on fire.
it’s Study from Canada has shown that the Covid vaccination has 278 times more serious side effects in the regular flu shot. That says it all. And despite my ET, and being one of the susceptible ones I’ve got Covid after having cleared the spike proteins out of my body. My husband with three jabs my daughter with two and I was none and we were all sick the same. Two weeks and coughing. My husband and daughter took the antivirals. My husband to Covid came back much worse than before and after the antivirals along with five of his colleagues at work they were sicker than ever. I didn’t take the antivirals. Are used alternative therapy and was back on my feet pretty quickly.
I am 58.
for all that, I’m hearing regarding your system and autoimmune problems, you should be getting rid of any, and every possible thing in your life that causes any inflammation in your body. Eat an autoimmune diet. Sleep well drink lots of water make sure the stool is working properly. Eat as much organic as possible. No perfume is in the house or on your body no conventional soaps or cleaning products. Do everything naturally as I have done. It took me a year and a half to transition to a complete clean life. The difference in my house and my family’s is HUGE! I also have anaemia from birth which is genetic. I have managed to turn around my body and even reduce my hypothyroidism by 60%!! Every single doctor, I ever spoke to me, assured me that cannot happen and I did it. It is so important to have an ortho molecular or functional doctor to be accompanying you on your health journey. I have consulted several doctors and continue to consult them throughout the year to keep my body chemistry balanced. I have a life again.
I am on Besremi right now. It was very good for me until a few months ago and now I’m having brain inflammation because of it. This is causing pains in my body, brain fog et cetera . I just finished a therapy with pulsating intercranial waves which cleaned out my brain stem. I was up and running into days. My memory is so much better after five weeks now. The pain and numbness in my neck, shoulders hands persists. It also moves around. It isn’t rheumatism. It is in carpal tunnel, but it does seem to be that the tendons are inflamed and the inflammation of the round. I will know more about this in the next 10 days. I have already reduced Besremi by 1/2.
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