That was nerve pain, passing out, brief paralysis, days spent staring at the floor etc.
I think it was a vax interaction with the IFN.
--
But last Monday (Apr 24) during just one hour that pleasant if brief life vanished.
-I felt a little out of it doing heavy gardening. Then later that day during just one hour I got a very strange light pain on my tongue and roof of mouth, felt like I'd had something spicy, which I never eat. Also extra dry mouth. The pain went away but dry mouth persists. I'm back to severe malaise, high BP, horrible nausea in my arms, and losing my hard earned weight gain. Back to walking like an old man and not knowing whether my fingers will go where I ask. So far just one glassy eyed event. And so far not as bad as the last round.
I get a minute or so relief occasionally, almost like a tide going in and out.
My husband plans a final trip to see his family in Thailand, we used to go together regularly. I told him last night with tears he will need to go alone, as we both agree with round 2 of this emerging I am not going to get much better. It's starting to seem the vax reaction effect may be permanent if cyclical.
I'm fine if I can't travel, just want to feel decent where ever I am.
I started Rux three weeks ago. I don't think Rux is causing these troubles and in fact Rux is supposed to help with autoimmune issues.
I suspect I've got Sjogren's syndrome, an autoimmune condition that dries out the mouth and eyes. But it can do more than that. It's 9:1 women over men so my victim lottery keeps winning. There is no treatment for it but Jak-i's are being considered. Sjogrens can be triggered by IFN, so it's worth watching for. But I think it's the IFN+ vax in my case, and an IFN dose higher than needed.
I have 4 Dr appts next week, I'll get my 1st counts while on Rux. I also have an appt with an integrative medicine Dr, Hunter has discussed this. Maybe there is some avenue there.
I'm forcing myself to maintain exercise and will try hard to keep with the MPN Voice forum as I know some appreciate my posts and likewise I do from others.
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So sorry to hear this, wishing you some good results at the Dr. appointments next week, and of course lots of HOPE! I'm so sorry it is all curtailing your travel plans. Thinking of you, and so grateful for everything you contribute to this forum, it has taught me a lot. Feel better soon!
I am feeling for you. Wishing you the Best!!! Hope your appointments produce some good ideas with regards to your treatment. It sounds like there is some inflammatory / immune stuff going on? Ruxolitinib should be helpful in this type of situation and I assume you will discuss a dose adjustment provided your blood values are cooperating? Please do keep us posted.
Agree it's near certain some sort of immune trouble. I've had a great many tests (17 vials at one of the draws) and so far nothing stands out. It's impossible that one can feel as I do today and not have something measurable way out of place.
On the blood counts, I've responded very well to HU and IFN. I'll find out on Rux in a few days. Unfortunately no correlation of our usual blood counts to this affliction.
Hi EPguy, truly sorry to hear of your ongoing battle. Hoping one of your appointments next week is with a rheumatologist.
Don’t worry about participating in the forum. Yes, you are a valued contributor and have certainly helped me understand the ‘complex’. I particularly like the way you break down an article to the simple, important facts.
We will all understand if you take some time out, but equally, we’re here for you too.
I do have a rheum, thanks for the thought. A neurologist too. Next week will be my third rheum visit. Problem is my troubles aren't really on the rheumatology charts, nor any others. All my extensive tests are negative except a weak positive for Sjogrens.
I'm the sort of patient that could become a case study: "a 63 year old male came into our clinic suffering from ..."
I’m very sorry that you are having a rotten time of it. I do hope you’ll be back on your even keel soon and I send you all good wishes for getting there.
So sorry to hear you are going through such a tough time. It's difficult when you feel like you are headed in the right direction then things take a turn. Hopefully this round will be short lived and you'll be able to feel better and get out and about. I'll keep you in my prayers.
Soooo sorry to hear of your setback. I do very much appreciate your posts and am sending you best wishes for a good week ahead and a quick resolution to this latest challenge. Hang in there!
Thinking of you and hoping that things improve for you x You're a very valuable member of this forum EP Guy...and we all miss you when you're not around x
Sending you all the very best wishes .....stay strong xxx
so sorry to hear what’s happening it sounds unpredictable & awful. I hope you find some answers or at least solutions along the line. Best wishes, Lynn.
Sorry to hear you are having such a tough time, I also have been diagnosed with sjogrens it was around 6 months after I started the peg, I also experienced a collapse of the bowel with terrible inflammation,biopsies couldn't determine exactly what the problem is. I consider myself very lucky that I got to see Prof Harrison as she took me off the peg straight away, this was last July, it has taken since then but I actually have started to feel a bit like my old self pre peg, yes still on loads of medication and suffer from the achey bones etc but nothing to how I felt on peg. Hang in there it may take time but hopefully the problems you are having will gradually cease. Take care and keep strong
Good to feel like old self. I agree reasonable achy bones are nothing compared to this.
If there is relief waiting in the future that will be fabulous. I did just get a 3 week taste of it. My GI is ok, but the neuro/nausea and malaise are unbearable. Strange is I can physically do most normal things.
I see your livers were high on PEG. Were your other counts doing well? Your Sjogrens is not too severe it seems, same here, at least the usual features of it.
I was doing perfect on Bes, all counts right in range. My mutation also was down nicely. Did you ever get a VAF reading on PEG?
My extensive tests show no inflammation anywhere, except the weak Sjogrens positive. But something has to be red hot in there. I'm on Rux now.
I believe very likely my troubles are from the flu vax reacting with the IFN, and the higher IFN dose than needed.
Yes everything else was in normal range apart from basophils which always seem a little high, everything is creeping up but still all within range apart from platelets and hct seems too hover between 43 and 45, I have blood tests every 3 weeks to keep an eye on the counts, liver has dropped dramatically which is good news. I guess we all tolerate interferon differently and my dose was too much for me and its a relief to be off it I do believe it still has long lasting effects but hope your symptons ease and you get some relief from them soon
Just sending you good wishes and hope you’re feeling better soon. We all seem to have more problems with the treatment than the disease! Virtual prayers and hugs coming your way. ❤️🙏🏻
Pray you get at least some of the answers you need from your appointments next week to help you move forward in the best way possible and that you get some relief from your troublesome symptoms.
Really sorry to hear about your complications. I wish we all didn’t have these troubles. I have a bit of an odyssey behind me. At times I felt powerless, not trusting my body and could not envision the next year. I was on sick leave for several months.
MPN was diagnosed about a 14 months ago. It all started about 6 months earlier prior to the diagnosis with large lumps on my scalp and rashes on body. I felt awful like always at the verge of a severe allergic reaction. I didn’t leave the house without an epipen, cortisone and antihistamines. I ended up in the university hospital. Finally I was diagnosed and it was said MPN triggered my immune system causing the allergic reactions.
Now I am being treated by an MPN specialist. He prescribed Jakafi 2x 10mg daily, Aspirin 100mg and I am still on Xolair injections once monthly, as well as fexofendine for the allergies. I am able to reduce the antihistamines and spread out the Xolair injection little by little.
Jakafi has been a lifesaver for me. My blood counts are within normal again except the thrombocytes, still high 600-700. Jakafi helped bring back my immune system back to “normal”. I feel good, I work 4 days a week and participate in life again. Golfing, being a grandma and socializing.
It took about a good 3 months for Jakafi to kick in.I hope it works for you , the same way it does for me. It really helps with the immune system. It just takes some time to work.
I am getting so stabilized, that I was thinking about switching over to interferon, due to the long term possible better outcome? But, I think I will be happy with what I have now and see how it goes.
Thanks much for the connection. My immune troubles seem one of a kind with no bio or physical markers so far and all vague misery. So no therapies to Rx so far. But I asked to start Rux (same 2x10) precisely hoping for what you experienced even as I was gliding well after the IFN for 3 months, didn't really need more cyto yet.
I've been very good on blood counts with HU and IFN, I'll find out in two days how Rux affects that.
I'm one month on Rux, if relief is in store I'm totally ok with all. My 3 week taste of relief was thrilling. I was getting ready to announce to friends "I'm back"
Note in my recent posts Rux can for some reduce the mutation similar as IFN can. Best if starting is less than 50-60% VAF. Conversely for some IFN seems to lose some VAF response after 6 years, I've posted on that. Rux+ IFN seems promising, my Dr is ok with that idea, but not covered by most insurance.
I few items from your reply:
"could not envision the next year." Life is supposed to be a journey not a sentence. Great your journey has resumed. 20-30 years of this is not ok.
"I am getting so stabilized, that I was thinking about switching over to interferon" I've had the same thought if/when that happens. I would start super low. But if my VAF continues down on Rux I might stay with it.
"Jakafi helped bring back my immune system back to 'normal'" Did you get some immune numbers that improved? Or just the important part, feeling better?
That is an interesting logical question, thanks for the imput. I have an appointment with my MPN specialist mid May, I will put that question forward. However, I feel mostly energetic and good, with almost no symptoms except for ringing in my ears when I am tired.
I tolerate Rux very well, gained 3 Kilos ( acceptable) it is a bit more difficult to get rid of them and never had such nice thick hair!
On immune numbers, I've had lots of them and all normal, so it's possible you never had any out of range too. But for both of us there must be or have been a really bad number hiding somewhere.
I've not so much the allergy like effects but "energetic and good, with almost no symptoms" is a very good way to cope with hope. Same here on the ringing, but I'm sure you agree some tinnitus is just background noise vs the malaise.
I was bouncy like a 25 year old till all this MPN stuff started. I need the weight and was looking fwd to it on Rux, just got to my range (127lbs) and then this started.
So sorry to hear of your troubles. Thank you for being so supportive on this forum. I'm sure many good wishes are with you. Best wishes for some answers soon.
very sorry to read about your new relapse. Must be demoralising and frightening. In my limited knowledge it sounds to me like you are dealing with systemic inflammation, which is stating the obvious for MPNers. As I have cutaneous sarcoidosis I keep an eye on the sarcoid discussion on social media and the suffering there is similar, with debilitating malaise and acute episodes. We know that understanding systemic inflammation is the new frontier and hopefully this nut will be cracked too in the not too distant future. I wish you all the best and to get back soon to a happier place. Keep us informed, your knowledge and experience is very important and we root for you!
Agree it's near certainly systemic inflammation. Has your cutaneous sarcoidosis shown up in any labs? Or is it Dx from the symptoms?
My problem is nothing is visibly or measurably inflamed. Somewhere there should be a test that will find a red hot source for this. I'm hoping the Rux will de-flame some of it. Jak-i's are conveniently one of the new things in rheumatology.
The cutaneous sarcoid was diagnosed from skin biopsies. It was described as non-caseating granulomatous dermatitis. At that point it presented as a series of inflamed masses of skin bumps. Luckily not on face, but on rest of body. Initially I was put on oral corticosteroids (nuclear weapon!) which worked but only temporarily. I started taking HU for other reasons and found it helped to calm it down. Never got rid of it completely though and now I keep my fingers crossed as I am on Peg. Hopefully the rux will help, I guess , with our unique symptoms, we are all experiments!
That's neat that HU can fix more than CBC counts. Are you still on HU with the IFN? My current opinion from my experience on IFN is to take close care on the dose, no more than needed for blood response, esp if there have been immune issues prior. Just my opinion but consistent with studies I've posted on.
I had my first CBC today since being on Peg only (dropped the HU six weeks ago). HCT too high at 45.8, so had a venesection and was told to increase Peg from 90mcg to 135mcg every two weeks. Fingers always crossed ... Thanks for your suggestion to go easy on the dose, I hope we are not pushing it .
Adding to my comment above: for sarcoid, it is common to test for ACE levels in blood, which is usually (but not always) elevated during sarcoidosis flares.
Sorry to hear you are so unwell and struggling. Perhaps you would benefit from cognitive therapy , which can help with anxiety. Hope you get answers and improve on Rux.
I did have therapy sessions, not sure if it was explicitly cognitive. I stopped when I started feeling better since my anxiety disappeared. As long as I have hope for improvement I can deal ok.
You have plenty of discomforts in your journey. Have you found relief with the right mental therapy?
I had some cbt after my sarcoid diagnosis and heart attack, before MF. It teaches strategies when coping with long term illness or other difficult situations. It can also help with anxiety. Good luck!
I am so sorry to hear you are suffering in so many ways. You have always been such a strong guy, and such a help to others. I really hope your doctors will find a diagnosis and some treatment that will enable you to live the life you want.🤗
EPGuy, so sorry to hear of your setback, but thank you for having the courage to share your troubles. Sending you healing thoughts and encouragement. Your struggle brings tears to my eyes. Hoping with your continued vigilance, you and your doctor will find the right balance. Hugs
I’m so sorry to hear you’ve relapsed. You have been in my thoughts and will continue to be. I hope and pray that things get “back to normal” for you - or at least to a very tolerable new normal. You are a gift to this community, no doubt as you are to all communities in your life. Best wishes!
so very sorry to hear what you have been and are still going through. Hoping your consultations this coming week will find answers and appropriate treatment promptly. Like so many here, I too appreciate your knowledge and posts on the MPN forum. Thoughts are with you. Fran xx
That's a rough hand to be dealt - dealing with any one of those would be a trial let alone playing whack-a-mole with novel symptoms. Hang in there.
Feel free to ignore this if I'm stating something obvious or a road you've already gone down, but have you thought about seeing a medical care team for a second opinion similar to what they do at Mayoclinic? I have a couple different friends who had health issues that were being chased around unsuccessfully by their medical provider(s) in a fragmented fashion shuttling from doctor to doctor, and in frustration went to Mayoclinic for a second opinion. Both had a thorough review and individualized tests over a couple days and came out with changed / new diagnoses and treatment plans that created better outcomes. Not trying to sell Mayo's services, just throwing something at the board.
Thanks for the thoughts. I do have a virtual visit scheduled with Dr. Gotlib. Mayo does look wonderful, being really well integrated. MD Anderson seems similar. But as with any US clinic it seems to require at least one physical visit. Even before this vaccine wreck I had enough malaise with the MPN that I was not able to travel like that, shame.
I plan to see one or more integrative med docs, maybe something can come of that.
So sorry to hear about your Sjogrens. My 48 year daughter has had it for 20 years and suffers from the systemic version. Plaquenil is a medication that can great it, however my daughter got hives from it so now she treats symptoms. You can tell when she has flare as she looks like she has mumps. Hopefully, your doctor can help you treat the symptoms, my heart goes out to you.
Does your daughter have the malaise /neuro troubles?
Plaquenil was (in)famous re Covid. I had not seen it re Sjogrens. Has your daughter been offered cevimeline or Pilocarpine? I know nothing about these except they come up with Sjogrens searches. It's on my question list for rheumatologist.
She does have the malaise, can't get out of bed some days. And gets migraines, joint pain, digestive and skin problems. She has not been offered pill around or cevimeline, I'll have to follow up on that.
I'm going thru this old thread. Your daughter has some likely good news coming, there are finally some real treatments on the way. I can provide more details if you'd like.
I now know that systemic Sjo is the standard, a whole body mess. Non-systemic (dryness only) is not common.
I'm way more informed on Sjo than this long ago Apr '23 thread. I'm active in a Sjo forum hosted by SmartPatients (SP). I don't like the way it works vs this forum but it is the best Sjo hangout, you should look into it.
Have you looked into the two drugs, Pilo and Cev I noted last year? These are just palliative as are most Sjo Tx, but this is about to change.
In a recent presentation there is this quote from an expert: "We're at the end of a dark period, started to get somewhat positive, and now "definite positive" trials." It's real.
Here is a post I made recently there that shows what is coming after decades of "dry" efforts. Missing is Nipocalimab which just had a good press release. Some of these may be avail off-label in the next year or so if things go right
Note in the chart here that type 1 IFN is implicated in Sjo and others; it's actually central to most (not all) Sjo cases they are finding. This likely explains why the IFN we use (type 1) is associated with Sjo when things line up wrong.
--.-
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From my post on SP:
This report has an up to date summary of the latest promising new drugs. We've heard of most but this is well packaged.
The Sjo section is about 1/4 down under the title of this post. If you download, it's on page 8.
This table from the report shows which drug targets are in fashion. CD-19 should be included for Sjo, it is a particularly promising target based on what Kyverna is doing with it for non-Sjo (I posted on this company recently) and this case report:
pubmed.ncbi.nlm.nih.gov/381... "After receiving anti-CD19 CAR-T cell therapy, she achieved complete (Sjo) remission (CR) on day 28"
My goodness! Thanks for all the info you have researched. I read through most of it and joined smart people. It looks like there are drugs in the pipeline but with side effects. How are you doing these days?
On side effects, these new agents have been looking quite good. That's a big reason for the excitement. As important they actually do something for Sjo for the first time, rather than just treat symptoms as your daughter and the rest Sjogies must do. But none are available yet for Rx. Some current treatments are strong immune suppressants, Rituxan (not Rux) being a top example. Others may be less so but are not very effective.
I'm doing better than the months right after my Last Dose of IFN. (you can see my post on that) But the Sjo quickly settled in, I call it "instant Sjo" which is not the normal path. It's doing its progressive destruction. I'm taking traditional Chinese medicine (TCM) from a skilled practitioner and it seems to be the only thing that makes a difference.
It seems your daughter has a more common long term sort. Has she been stable and able to do regular things?
So sorry you are experiencing these horrible symptoms. It seems from previous posts from the being of your journey with INF's that you've struggled with on-going Malaise even on the lower dose. It appears that your body can't handle this drug. Some do great and others are almost toxic on it. I couldn't handle PEG on the lowest dose possible. I don't know your unique situation nor am I a doctor but have you thought of taking a break from all these drugs and let your body detox. for a good 6 months? (stay on aspirin & vensections)
Sounds as though your body is giving you a lot of feedback on reactions to the drugs. Listen to this feedback. My reactions to vaccines and INF's is very similar to mine. The last vaccine I had was the covid booster while being on PEG (22.5 dose) and my knees were completely on fire and I could hardly walk! It went away but I knew it was the vaccines interaction with PEG. The first 2 covid shots were fine but I wasn't on PEG. As I've said before....I don't ever get the flu shot as had a horrible reaction 9 years ago. You might just be extremely sensitive on any drug or vaccine given. Perhaps your body is screaming for a break from drugs. It took me close to 6 months just to rid my body of the effects of PEG.
I wish you well and enjoy your posts. Your in my thoughts. Kerry
You're right about the malaise on Bes. It's many X more these days, but for sure it was not zero then.
I tolerated Bes flawlessly by the numbers, CBC and CMP. While on it my MPN Dr said it looks like you don't even have any hematological condition. And mutation went down nicely.
*But* my dose at 140 was too much. I needed only ~75 to get CHR and felt great at that dose. Dr wanted to max allele reductions, which I think would have been fine on 75. Agree on the sensitive.
Many vaxes actually have listed a strong contraindication with IFN-gamma, see list from epocrates. But this is not found on the label. I suspect IFN-a and the others should be added at some level. Note "may result in amplified immune response" No kidding.
Your vax description is familiar for my flu vax experience. Moderna vax went fine, a bit down the next day as is supposed to happen. But the flu vax next week felt weird as I left the pharmacy. Then a brief unfamiliar knee joint pain, then Parsonage Turner syndrome neuropathy, then trashed.
I've had many vaxes pre-IFN without trouble. I'm still provax in the right context, I agree with you the flu vax is not worth the risk for me, it's not that effective and the risk is repeated every year. I'm also likely pre-set now to react to it even as Dr said no. At the other extreme, measles for example is 90+% and given only once or rarely. Covid vaxes work better than flu vaxes, but experts do debate whether repeating the same formula is that useful assuming t-cell response is durable.
If they make a 10 year or more formula with broad activity the risk trade off changes for me.
There is a gray area in flu and covid vaxes; the different brands have varying activity. ie Moderna is 50mcg while Pfizer is 30. I chose the max options for both, probably a bad idea.
I probably need to continue cytoreductions, I don't have that much trouble with HCT and never had vensection, but PLT was my main trouble at Dx. I'm on Rux hoping it can hold the counts and quiet the immune trouble.
I read your earlier post of the bad reaction to the flu vaccine and how you might still get other vaccines including the one for shingles. Since I started taking Peg IFN my experience with vaccines has been very bad and I am convinced it is not coincidence.
I never had any problems with vaccines before I started using Peg (in combo with HU) but I got the bivalent covid booster last Dec and immediately I was peeing like crazy (no UTI detected). My liver enzymes shot up and I had months of testing for potassium levels, kidney/adrenal function. My sight in one eye also took got much worse. It took a couple of months for me to start to feel normal again.
Then in early March my GP suggested getting the shingles vaccine. Initially I rejected it but he kept pushing me and I relented. Within hours of getting the shot my arm was swollen and red at the injection site and I started to feel achy and sore like I had a bad flu. Those symptoms lasted about 5 days. In the following week I developed a cough and a number of my old scars became bright red and inflamed. Some of the scars developed small lumps. I still have the cough and the scars are still inflamed.
As you mention the paperwork says little about possible impact of vaccines while taking IFN's. Too many of the Dr's who are not experts on these matters just don't understand the risks of the adverse reactions.
I don't know what the vaccine jabs have done to me but I know I will not be getting any more vaccines while taking the IFN.
You can see my opinions in reply below to jon1972. I am increasingly agreeing that with IFN-alpha rapidly entering wider use it needs to demonstrate a negative, why is it not as risky as IFN gamma with vaxes.
The Shingrix vax can be quite rough for everybody. It hurts going in and stirs things up. But if Rux is any possibility in the future this vax may be esp worth it.
One idea i've had is to take an IFN holiday around the vax time. Then the body is not getting hammered from all sides with IFN. This would need close Dr monitoring and agreement. For some like me, the blood counts held for 3 months+ off IFN. This would make sense mostly for the once only or rarely type vaxes.
Luckily I got the Shingrix while on just HU. That is another option, if blood counts don't hold while off IFN, substitute HU around vax time. Again just ideas that would need Dr agreement.
I had this flu reaction about 9 yrs ago and I was not on any drugs to control the high platelets. I truly believe though that just having an MPN can interact adversely with Vaccines despite not being on any drugs (it has for me but my body is extremely sensitive to any drug!)
The experience I had was both calves began swelling up, moved to the ankles, feet and then dissipated. It was during work (was a teacher) and it was so alarming that I left work and had ultra sounds done to make sure it wasn't clots. The doctors couldn't figure out what it was and when I mentioned the flu shot I just had they all said no it couldn't be the flu shot. Nothing lingered further in my body from this vax-at least that I know of.
I knew it was the flu shot because everything else was ruled out. Through my whole MPN experience thus far I've realized that "I'm mine my own best doctor with knowing my body and advocating for my self." The covid booster while being on INF was horrible as well. I had a feeling this would happen-even asked my doctor who said "oh you shouldn't have a problem.
My whole body became hot within hours and then my knees felt on fire and hurt really bad. It was really weird. I had ice bags on my knees all day. It's like these Vax's go to the place of the most inflammation which for me is the knees. Sorry for the rambling.......No vax's for me anymore except absolutely necessary. Did have a tetanus shot and no problems there. Will never get Shingles or flu shots. Best to you my friend. Kerry
I’m so sorry to hear of the terrible symptoms that you are experiencing, Hopefully you’ll get some answers and relief very soon. I, too, appreciate all that you give on this site! Very helpful and encouraging. Hopefully we can bring some encouragement to you in your time of need. May God give you peace and hope.
I send you my best and deepest wishes for your recovery! I have been going through some rough patches, lately, myself. I find that I have a pretty big fear of going out in public for functions because I can’t seem to trust my body to get me through these situations without having an episode of weakness and shortness of breath. I also am having Sjogrens symptoms. I have had dry eye and dry mouth symptoms for years. In the last 2 months I have had a salivary gland swell up and be painful as all get out and then within 3 weeks had a peri orbital infection below my right eye and in the lower lid. I have let my local heme/onc doctor know about this but he has not said anything about it. I am going to be sure to address it with him, soon! I guess it’s time to give up on interferon, if it is being adverse to my body. Such a shame because finally my HCT was at 40.9 without a recent phlebotomy! The last one was in January.
I well understand the fear of going out. Excepting the worst periods I can present fairly normal, the suffering awful but stays inside. So I stay inside
Your description does seem classic Sjogrens. Are you seeing an eye Dr? The dryness can cause eye damage if it's bad enough and your symptoms should be of great interest to an eye Dr but not the Hem/onc's problem. If you feel a gritty sensation in the eye that is one indication of very dryness. Likewise see a dentist, tooth decay etc is a risk with very dry mouth. My dentist suggested XyliMelts, it's not a drug and works really well at night.
It does seem your Sjogrens or related issues are increasing since starting IFN. What is your current dose?
Thanks for the info. We have none, but with that risk it should be better noted on the package, there is none. One tablet has 1gm so it would be bad news.
I really hoped that I could take Pegasys and do well! Live happily ever after, I’m on 70mcg a week, now. It has taken 9 months to finally see a good response.
I am seeing an ophthalmologist and a retinal specialist since I have significant drusen in my eyes. Have had these drusen since I was 50. I do see my dentist every 6 months. Thinking I should go every 4 months.
I hope you are on a better path and that you can have more good days than not so good days, soon. Onward!
Are your bloods all in range now? That would be neat. But I'm good evidence of what's in reports, good counts doesn't always mean feeling right.
Agree on the proportion of good/bad. That blissful three weeks it had flipped quite well. It's strange the malaise can change either way literally within seconds, same as round 1.
Only my hematocrit is in range. My white cells are at 14.6 and my platelets are at 750 but were 848 a month ago. I can tell that my HCT is in a good range because I don’t sweat so much during the day or at night. My skin doesn’t flush as much, either. But fatigue still makes itself at home in my body.
Revisiting this thread. Agree the IFN for you is a gamble at this point. My Dx of Sjogren's is official now and the Sjogren's blood marker increased rapidly.
I believe that last Bes dose I took when already feeling odd is what took me down. Sjogren's can increase very quickly in some cases, like mine and maybe yours. Interesting Sjogren's is tightly related to INF-a levels, so it's reasonable that adding more IFN could be a problem. Rux blocks some of the bad IFN effects.
There are reports on Rux for autoimmune disease. But only MPN pts are suited since it lowers blood too much for others. This is a case where Rux worked wonders on one autoimmune condition, not Sjogrens).
"After 6 months on (Rux) he was noted to have marked symptom improvement.."
I am glad you know, officially, now. I assume you have started Rux? I hope you start to feel better, soon!
I have a Telehealth appointment tomorrow with my hem/onc. I have not done anything about the Sjogrens, yet. But I will discuss my thoughts with him on it. I am honestly so very tired. I think I could sleep for a week! All my lab values increased since last month which means an increase in Pegasys. So, we also will discuss a switch to Jakafi. Did I say I was tired?! 😅
Fatigue is a top feature of Sjogren's; it's part of the systemic type. Some pts have only the dry mouth or eyes. Of course MPNs have a reason to be tired too.
From my recent reading, it seems the combo of Rux+ IFN might reduce the harshness of IFN alone by preventing some of the undesired IFN actions. But my Dr said insurance is unlikely to cover this. Have you blood numbers for the autoimmune conditions? (RF, CRP, Ss-a/b etc) It seems a good idea to watch this carefully while on IFN with a rhuem condition. My SS-A, a key Sjogren's number, jumped a lot in just couple months after I stopped IFN.
I have not had any of the labs to detect any autoimmune disease in 7 or 8 years. I have had an elevated CRP and ANA in the past. My RF was ok. I was diagnosed with Sero-Negative Rheumatoid about 7 years ago. But it turned out to be an incorrect diagnosis.
Sorry I missed your previous question, yes I'm on Rux, approaching month 2. Dr says I should feel better. So far it's not done that but I know it can take time. I've started dry mouth pills.
You should ask Dr about the Sjogren's SS-a SS-b test. But these can be still negative with Sjogren's. ANA and CRP + are autoimmune markers that can associate with Sjo.
For sure it's a good idea to discuss with Hem and Rheum whether to increase or even continue IFN.
I think many of us should get IFN blood test while taking it, but my Hem says that is not standard practice so insurance won't pay. Sjogren's and probably other autoimmunes thrive on high IFN levels.
I had my Telehealth visit and my Dr said to continue the Pegasys, refer me to Rheumatologist and schedule a phlebotomy. He seemed more focused on the Peg rare side effects more so than the Peg instigating possible Sjogrens…
I was amenable to his treatment plan mostly because I just have no fight left in me.
This is a sample of a reported connection of IFN-1 (the type we use) and Sjogren's:
"In this disease, a large number of studies have shown that an overexpression of type I IFN... is present..." and " inhibition or modulation of IFN signaling has been regarded as a potential target for the therapeutic approach"
Results showed reducing IFN action was helpful in many cases.
This brings in the Jak-i's including Rux. Mr Dr said with Rux addressing Jak 1 and 2 it should be well suited for the task.
It doesn't directly implicate adding external IFN to our bodies. But I have found a set of case studies in the Hepatitis context where IFN or PEG-IFN were shown to be triggers. If IFN is stopped in time the effect is less likely permanent. I think I missed this cut off and the vax triggered/amplified the trouble.
Hi EPguy. I too am sorry to hear that you've been through so much with this apparent adverse reaction. It has me concerned being that I'm on such a high dose, back on Besremi again @ 400+ mcg's. I'm way overdue for my Covid booster, still need to get my shingles shot, and they want to give me a hep C vacc, in addition to yearly flu vacc that I've always have done for past 10+ years. I really hope they can get to the bottom of what happened and find a solution. I think the suggestion to seek out specialists at Mayo sounds really good personally. That's probably what I would do as I've heard they are a good last resort for unsolved cases. I tried searching for Besremi and vaccines and wasn't coming up with anything. I'm sorry if I missed it somewhere but do you have a link to any of those articles you can share?
I had inquired about Rusfertide to my specialist and he said there was a new drug in clinical trials for HCT reduction that works like Rusfertide but is better. We discussed the possibility of reducing my IFN dose and adding that other drug. It's tempting due to the hefty doses of IFN I need at the expense of some nasty side effects.
I have been a total provaxxer and would normally have wanted to go for all of them ASAP. But I think there needs to be a deeper dive into IFN and vaxes.
There is no contra for Bes or PEG vs vaxes that I can find. But:
This list is from my reply to ritaandscooter1 above. There is a contra (their strongest type) for IFN-gamma and many vaxes. Alpha is not on this list but I wonder how well it has been tracked. A whole lot of Alpha, including Besremi, is about to get real world testing with us. Vaccines are quite active with natural IFN in the body, and experts still don't know much about how IFN actually works in detail. So might adding more IFN to the stew be any increased risk?
I've had all the vaxes you list.
On Hep, did you mean Hep B? There is no HepC from what I can see. Of the vaxes you note, the Shingles and hep B a good risk/benefit. Highly effective and very long lasting, like measles.
"More than 1 billion doses of the hepatitis B vaccine have been given worldwide and it is considered one of the safest and most effective vaccines ever made" and it's lifetime.
"Shingrix is more than 90% effective at preventing shingles and PHN"
"Immunity stays strong for at least the first 7 years after vaccination."
I'm pleased I got it while on HU including as a just-in-case I start Rux. Its benefit is not quantified with Rux, but Rux way increases Shingles risk.
So for MPNs with any odds of using Rux, this is an esp a good dice roll.
Covid:
If you've never had the bivalent booster it's worth getting. But if you've had a strong Covid infection recently it reduces the need for it, while infection provides less predictable protection.
Flu:
This is for me the highest risk lowest benefit shot and likely I won't do it anymore unless/until they get better ones. I also did it every year. Flu shots are over represented in adverse reactions largely because they are so frequently given, not necessarily because it's inherently more risky. But at only ~50% effective even when they nail the variant just right from what I've read (and usually less) it's not worth rolling this dice every year.
The spacing of all these vaxes is important, but I can't say which spacing is best. I took Covid and Flu a week apart, seems not a good policy.
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On Rusfertide your specialist likely is referring to this alternative, SLN124,
It is a modern gene therapy that gets at hepcidin. This trial is for PV. It likely gets deeper action than Rusfertide.
If your IFN dose is being set by HCT, this is a great solution for a smaller dose.
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I would love to consult Mayo, but I know of no way to do so remotely for out-of-state pts.
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*In my opinionfrom my experience* if you're getting heavy sides on Bes the risk of over-topping them with vaxes is higher. I had plenty of sides (even with all bloods perfect) even at 140, while needing only ~75.
Thank you EPguy. I've had the 1st/2nd Pfizer shot + 1st booster only. I've been debating further covid vax's for both myself and my ederly mother because of the predominance of Omnicron, but I'm not sure how much Delta is in the environment yet. If i knew the risk was only from Omnicron I probably would not worry about it due to the decreased severity. On the Hep, you are correct, I just doublechecked and he said Hep B is what I don't have antibodies for. I was not aware of the mediocre effectiveness of the flu vax.
Maybe it would be beneficial to skip a cycle or two before getting a vax? At least in the case of the higher risk ones like Flu and possibly Covid since it's new and more unknown risk.
My problem with both Bes and Peg is there is a hard barrier in dosage and then I start experiencing severe low back pain. It's a labeled side effect for the Peg I know for sure, and assume so on the Bes since I experience it with both. I can't exceed 140mcg or so on the Peg, 400 on the Bes w/out experiencing this pain. It's so bad that I'm taking Tylenol every few hours, being mindful of the max dose. The irony is that unless I cross that threshold my counts don't seem to respond favorably. This was the original reason I was thinking about starting that clinical trial. The question of the vax may be another reason though.
Thank you so much for being a valuable contributor to the forum EPguy and I really appreciate the info and feedback!
There should be no worries on the Delta, all current Covids are variant of Omicron unless something drastic changed. The bivalent mRNA has Omicron and Wuhan in it.
It might be worth waiting for a next gen vax, , one is already available in EU/UK, VidPrevtyn Beta. (terrible name) Some UK members have been getting it. But in the US could be a long wait for one.
"First and only next-generation protein-based adjuvanted COVID-19 booster approved in Europe. Strong immune response against all tested variants of concern"
The Bes mfr should find your result worth looking at. There are no data on misery vs effect that I know of, that's unfortunate to have that trade off. Some sort of combo therapy does seem worth considering.
Are your liver counts ok? Tylenol (and IFN) can be hard on it.
Yes, fortunately my liver function has been right around this same level for the 4 years i've been on IFN. It tends to be slightly better on Bes so I expect my ALT will probably drop a few points the longer I'm off Peg. It's not a nonstop thing with the Tylenol, but more like the next several days after injection, but yes, that's a concern of mine as well.
Dear EPGuy, When you were gone for awhile, we really missed you. You have always had tons of great info and charts and articles to read. You helped us all. Now, if we could only help you! We will keep you in our thoughts and, of course, hope that things improve for you soon. You're a very valuable member of this forum . We miss you when you're not around, but don’t push yourself to write. We are concerned, hoping you find strength in our missives and send you all the very best wishes. Trisha ❤️
Please investigate microbial dysbiosis in the gut and mouth as it applies to Sjogren's syndrome. It may require a dietary change in addition to balancing gut bacteria with pre and probiotics to experience relief. In addition, fungal load may also contribute to your symptoms.
"Sjögren’s syndrome showed significant gut dysbiosis compared to controls and environmental dry eye syndrome" They found specific ones in an earlier mouse study.
Yes I have. I have chronic kidney disease. In my research I came across dysbiosis and It's effect on the whole body. In my case when meat is eaten gut bacteria create TMA which when processed by the liver creates Trimethylamine-N-oxide (TMAO) a metabolic toxin which increases the risk of atherosclerosis and cardiovascular events in chronic kidney disease (CKD) patients. It has also been implicated in autoimmunity and vascular dysfunction. Lactobacillus rhamnosus GG is one of the few strains that mitigates TMAO concentrations by gut microbiota modulation. Gut bacteria do not create TMA from a plant based diet. If I have animal protein I take the GG probiotic with it to reduce TMA. I encourage you to learn more about the the gut biome in addition to the effects medications have on it in addition to enlisting a nutritionist.
From searching so far there is only a mouse study on specific probios for SS. (sjogren's) But as always more stuff is happening.
More broadly since so many of us have co-diseases, this new field of microbiome is worth learning more. But even after 20+ years of its public relevance I think many regular Drs are not with it and there are few standards to follow.
I happen to have some Lactobacillus rhamnosus GG. I've taken it before without trouble before all this happened. I'll try again.
Hi EPguy, sorry to hear of this additional diagnosis.
I came across this link which you may find interesting. Lots of information to wrap your head around (you can do it better than most) with regards to the link of MPNs alone or indeed their treatment (Interferon) to autoimmune disease. SS is mentioned, as are other AID!
I’ve often contemplated Pegasys as a treatment, as so many seem to benefit in a good way, but for me the possibility of stirring up an autoimmune condition has been the one thing that has prevented me from doing so, probably because I am very aware of the impact of AID living with someone who has RA.
Interestingly, it also discusses the ‘microbiome.’ I hope you get something from it!
One item of interest to MPNs is in ref 38 of this article. A striking result as they note is how high the odds are for having DNM3TA or TET2 if AID (autoimmune disease) is present. See the right most position of the line for AID in this chart, even more effect than malignancy. Theses are log scales so the effect is really large. Indicates having AID increases non driver risk. But not clear whether the reverse applies, having these non-drivers increasing AID risk.
In ref 55 "Autoimmune side effects (of IFN) are infrequent but may be hazardous and irreversible...Patients with previous autoimmune phenomena should be treated, if possible, with alternative drugs since there is risk of exacerbation of these manifestations in these patients" This is for pre peg types but the same warnings are on peg types. The irreversible part, which I seem to have, I think is unique to IFNs in our therapies.
Thanks for your input, always makes things a lot simpler.😃
I had a discussion with my MPN Specialist when I was considering Pegasys. One of my questions was - If I were to develop an autoimmune condition could it be reversed if I stopped the medication; her reply was ‘Not Always’. I can’t get beyond this thought, so happy to stay on hydrea.
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