I have ET jak2 and am on Pegasys, which is working well for me. I also have fibromyalgia, IBS, Raynaud’s and arthritis which don’t help with working out what condition causes what symptoms, the most common being pain, brain fog and fatigue.
Many on here have posted what supplements they take to help with inflammation, pain etc and I feel totally confused as to what helps where! I am about to book a session with a naturopathic nutritionist to do a deep dive into my diet etc to see where improvements can be made.
I have got to the stage where I feel I need to take a more natural approach to dealing with my health, rather than relying on countless prescriptions from my GP, quite a few of which I’m sure I could phase out and replace with a more natural substitute. Of course, I’d still take any medication prescribed by my MPN team!
I suppose what I’m asking is, are there cited articles out there someone can point me to, that explain how MPN’s affect the body with regard to inflammation, deficiencies of vitamins /minerals etc and what supplements and dietary changes have been found to be helpful?
I have found Hunter’s comments always to be incredibly informative on this subject and love the idea of a conventional/integrative doctor combination. Sadly my GP surgery are rather derogatory towards naturopathy so there won’t be any collaboration there!
Thank you for reading and I hope someone can help this confused soul!
Gill x
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Jellybean129
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That's great you're looking into inflammation! MPNs and inflammation are definitely connected. You may be aware of this, but if not, some of the other health issues you mentioned also have inflammation as a major component.
Here are some articles about MPN's and inflammation:
MPN specialist Angela Fleischman has done research into MPNs/diet/inflammation, which she talks about in this video: youtube.com/watch?v=Dh0H418... . It might be helpful to look into following the Mediterranean diet/an anti-inflammatory diet.
Also, if you're going to work with a naturopath, that's a great opportunity to work on gut microbiome health. This plays a big role on inflammation (and improving gut health can get rid of inflammatory conditions, such as IBS). There's an organization called Zoe Science and Nutrition that does a ton of research into gut health and its impact on lots of other areas of health. They have a great podcast: zoe.com/learn/category/podc... ...I highly recommend listening and reading their content!
Thank you so much, Lucy - lots of information to dive into!
I do try to eat as much as I can of the Mediterranean diet and we grow a variety of veg which is a real bonus, but I just can't get the diet right! I'll have a good dive into your links -and see where I might be going wrong...
Thanks again for replying - this is such a lovely place to get good, solid advice ☺️
I've just looked at the symptoms of Sjorgen's and seem to tick all the boxes 🫣. I have eye drops for dry eyes and suffer from extremely dry skin, mouth etc. I also get nosebleeds and joint/muscle pain (which could be the fibro).
Thanks for flagging that - looks like a trip to the GP, if I can get past the receptionist!
I try to minimize my "lectures" but you're in a precarious position. Sjo is poorly understood by most who don't have it. You are now familiar with its malevolent doings. It is an evil companion you absolutely want to reduce risk for while supplements will help only at the edges. IFN is contraindicated in general with existing autoimmune (A-I). It seems yours either started or increased while on IFN and your Dr should have inquired. Even if stable the risk is severe. Thyroid issues on IFN are known but generally treatable. Sjo unfortunately is a whole other thing and is one of the worst case A-I's that IFN is prone to cause or exacerbate.
You likely don't have Fibro as a stand alone Dx, rather you have Sjo which offers these effects bundled with all the others.
You're at ~ the same months into IFN that I was. Like you, other than the devastating Sjo, IFN was working flawlessly, perfect bloods, metabolics other than malaise. I had virtually no warning however.
My advice is to immediately stop the IFN and next, discuss with your Dr. ASAP. Also to get an appt with a Rheum. Note that Sjo is in part caused by over active IFN type 1, exactly the type we inject.
but your Dx should not require all that since it's already clear. The most direct Sjo test is SS-a, but ~40% pts are negative.
One good part is as a woman, Sjo on avg is less severe than for a male like me. But these are averages. Other good news is there are finally a line of promising treatments in late trials after years of duds, one with FDA Breakthru status. Some specifically are IFN inhibitors.
I read your post “last dose” and by golly what a truly awful time you had. Have your symptoms stabilised since then? You’ve done a fantastic job of research, for which I am grateful.
I’ve not completely digested all the information you have presented as, to be honest, I’m a little bit stunned and there is a lot to digest. It is certainly an eye opener and has galvanised me into getting my ducks in a row in preparation for a lengthy call to my haemo team. I feel rather cross (and let down) at the complete lack of checking my Haemo team have done - they have in my notes I have fibro (which I’m now beginning to question), Raynaud’s, IBS, body-wide joint/muscle pain, fatigue brain fog; all of which have got worse over the last few months. All I seem to get is “your blood results are really good” and “you’ll expect to get some symptoms with an MPN”. Absolutely no cross referencing with other listed ailments.
Thanks again for such valuable information. I would never have known to query my IFN treatment and, as you say, if it is Sjogren’s, I’d rather act now than pay later.
I hope you are keeping things under control and have got back a better quality of life now. I read your trip to Yellowstone post - I hope you’ve managed to go back: I would dearly love to visit there one day as I’m a complete volcano nut! (I’m currently following the latest eruption in Iceland)
Thanks for asking. My Sx are better than the first weeks in 2023, but not stable, they rarely are with Sjo.
Your Dr's comment "you’ll expect to get some symptoms with an MPN" is true but the combined Sx you have fit really well to Sjo, much less so MPN.
It is a lot of new info. And it's generally more complex to figure than MPNs. You should seek an MPN Dr with deep experience with IFN, these Drs are familiar with the hazard and this part of the PEG label:
"May cause or aggravate fatal or life-threatening neuropsychiatric, autoimmune, ischemic, and infectious disorders. Monitor closely and withdraw therapy with persistently severe or worsening signs or symptoms of the above disorders"
These HepC cases are where that label warning came from. We are now adding to this data as we see this infrequently happening with IFN in use for MPN.
You are entitled to be cross. Your comment "all of which have got worse over the last few months" ups the urgency to pause the IFN till you can get that Dr appt. Another type of Dr that may have more experience with this infrequent outcome is an older hepatologist who served during the IFN era for HepC.
There are very few Sjo specialists, far less than MPN ones. And they usually focus on dryness, as you know, the other stuff is equal or more important. One told me my Sjo might reverse bec of my unusual route to it. I had a few weeks early on where it came close but lost it.
It is common in Sjo to have perfect bloods, even most or all antibodies can test normal.
On quality of life, Sjo is not good in that dept. On avg it is progressive, irreversible, and for now has no approved treatments. (this is on route to change) But if you pause the IFN it may stabilize or reverse.
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A very interesting trial is starting where they will use a tiny oral dose (~.002% of a regular one) to treat Sjo:
This suggests IFN-a might be beneficial for Sjo, but not in the high doses used for HepC or MPN.
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We have been twice to Yellowstone aka"Jellystone" from the cartoon. But the picture you saw is from our former yearly trips to Grand Canyon. My Sjo has put a stop to much of our life, but we are going to try a Death Valley trip very soon.
I have had a good dive into the links you posted, together with other articles and to be honest, I’m still quite peeved that the concerns I have raised every telephone consultation over the last few months have been shrugged off. One of my bug bears is the difficulty in getting a face to face appointment, it’s always a quick telephone call to report blood results and if they are stable, nothing else seems to matter. I remember watching a video of Prof Harrison, who described how her consultations went. She goes over the bloods but also does a comprehensive ‘welfare’ check, going into the patient’s quality of life, symptoms, worries etc as they all need to be taken into account too. A couple of years ago I requested an appointment at Addenbrookes in Cambridge, which has a very good MPN team, who act something like a central hub for various hospitals in the wider area, my local hospital being one of them. I saw Dr Godfrey, who did the exact same thing and spent a lot of time asking both me and my husband how my life was, what my concerns were etc. she was like a breath of fresh air! Sadly, due to their immense workload, once I was on an agreed plan of action I was referred back to my local team - a department that struggles to retain staff so every appointment I get is with a different doctor/nurse.
I saw my GP on Thursday (a miracle in itself!) and I’m amazed she even understood what I was trying to say - my worst brain fog/fatigue day I’ve ever had, where I just couldn’t find words to describe what I was trying to say, lost my train of thought then completely locked up mentally and verbally. She said urgent referrals to rheumatology are taking a YEAR and that is only for the initial consultation, no tests! She also made the valid point in that while I’m taking Pegasys, my interferon levels would be naturally higher and would mask any disease flags.
I managed to finally get through to the haemo team yesterday and spoke to one of the nurses. Let’s just say she was very lucky it wasn’t a face to face appointment… In summary, after all I explained to her she questioned the link between INF and Sjogren’s and why I needed to even ask about stopping it. She finally agreed to have a word with the team on Monday and “we’ll call you before you take your next dose on Thursday”. To that I thanked her and said I wouldn’t be taking any dose until I get a comprehensive review, face to face!
Sorry this is rather long and thank you for being such a good sounding board. I am now beginning to understand what a mountain you had to climb to be heard. It almost seems ‘do you want MPN complications or autoimmune trouble’. Your posts have given me the courage to stand up and insist I have a voice and a choice.
Yellowstone, Grand Canyon, Death Valley?? OMG you are killing me - just throw in the San Andreas Fault and Mt Rainier and you have my perfect road trip!
On your comment "She also made the valid point in that while I’m taking Pegasys, my interferon levels would be naturally higher and would mask any disease flags. " Have you received IFN level tests? There is no standard in MPNs for doing so, my MPN specialist agreed when I asked. There is a "interferon-gamma release assay" used to check for TB. But this checks IFN-γ, (gamma) not the IFN-α (alpha) we care about. If there is an IFN test for IFN-type 1 alpha, I think everyone on IFN might benefit. But levels alone may not detect its varied ways of action.
And what disease flags are getting masked? You have them well exposed and discoverable if they would listen. Her comment does not add up. It seems you did not have any outstanding symptoms at the time of your visit with Dr Godfrey, he'd be a right one to refer you faster. "she questioned the link between INF and Sjogren’s and why I needed to even ask about stopping it." All she need do is read the IFN label and act on the side of caution. She might be thinking of thyroid A-I emergence on IFN. This is a more benign Dx on avg; as we see here it's usually treatable. But the label, and reality, cover much more. Good plan on not doing a "last dose" till you consult a proper Dr. My blood counts held for 3 months after that last dose. yours may also hold for a while. Good plan is to get FBCs to monitor thu any pause/ cessation. My Dr did that.
UK members here who got one appt with Guys seem to get ongoing support from them while continuing with their local Drs. Hoping you can get that eventually.
I actually had not much trouble getting the care, but initially had to go private for the neurologist on the vax reaction. It did take a few months to get the Rheum appt but then the Sjo Dx was quick. With your symptoms and a positive SSa test you should also get the Dx easily. With a negative test the Dx one can encounter resistance even as you still have all the classic signs. A lip biospy is the usual next step if SSa -, not to know you have Sjo, but to get the care the Dx offers.
I know other members aren't so excited to see these discussions. But I think my posts can or even have saved at least one MPN from this outcome, so it's worth it.
"do you want MPN complications or autoimmune trouble’" for me the A-I is 10X the MPN, but of course others can have it differently.
If MPNs had ended up with IFN-beta vs alpha, we might not be having these discussions. Beta has milder A-I warnings, no back box, and I've posted on a paper that asked why not IFN-B? It's for MS as Plegridy, and there are no MPN data unfortunately.
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Here is an excellent quick description of Sjo from J&J Co, who has a Sjo drug soon to be in phase 3 with breakthrough status. This may help you explain what's going on:
"More than 50%of SjD patients have a moderate to severe form of the condition, and disease burden can be as high as that of rheumatoid arthritis or systemic lupus erythematosus and is often associated with impaired quality of life and functional capacity, and increased mortality risk."
You also may benefit from the Sjogren's forum at SmartPatients.com. I like this HealthUnlocked format better but that is where the best Sjo discussions are. This year, 2024 may be a pivot point in getting Sjo in the light, partly because treatments are finally on the horizon.
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That fault is right under I-15 freeway on the way to Death Valley. It's not actually visible other than occasional small ridges in the ground, but is due to happen any time. We've also been to Wa state, where Rainier is, I do miss our long trips. I actually compare which MPN drug I was on for the later ones, HU, IFN, then Rux. I traveled best in the HU days.
Phew! There is so much to digest! You have done so much research which I now understand is the only way you can fight your corner. I always used to be the kind of person to compromise just to keep the peace, but now realise I won’t change a thing that way. I will rev up my scientific brain (which is somewhere in the fog!) and get some learning in before the haemo calls this week.
I certainly appreciate your posts - many on here seem to be coping with other health issues as well as an MPN, and offer solid advice on how to go about getting help. Like you said, if just one person has been saved from going through what you did because they read your post, it was worth every word you wrote.
Thanks for the heads up on the Sjogrens forum - I’ll have a look through that.
To have such geology on your doorstep, so to speak, makes me green with envy! I’m in Norfolk, UK and our geology is chalk and sand - not the most interesting! Mountains, deserts, fault line and volcanoes - my dream!
Forgot to say, I was reminded by Mhos61 about shared care and remembered that I have it with the MPN team in Cambridge - I’ll just have to push for an appointment there as I trust their judgement far more than the local team.
Too much peace can leave too many pieces. Good you're taking action.
A calif saying is "surf in the morning and ski in the afternoon". Not sure if anyone really does that. But it's the "vibe". I'm native Calif and still enjoy it (if the Sjo lets me)
great that you want to be proactive in your own health!
If you haven’t already, do get a blood test to check all your vitamin / mineral levels are optimal. GP should be able to do : vits D, B12, folate, iron, ferritin,, thyroid ( TSH, Free at3, free T4, thyroid antibodies)
The nutritionist may also want to know if you have any heavy metal toxicities . I’m sure she can offer many other tests too like adrenal health.
If your gp can’t do them there are plenty of private tests in uk for basic vits etc.
Great books I would recommend are Dr Sarah Myhill, “From naked ape to knackered ape”, and the books by Dr. Campbell-McBride on GAPs diet. These 2 are helpful for starters. Check their websites too.
Please don’t think the NHS will be able to help you with dietary questions. Most Uk drs get just ½ day on learning about nutrition in their 7 years of training. There go to solution is always drugs. That’s their job.
You will have to do your own research , in a more general manner, in the area you are interested in, as there is sadly not a lot of research done on vitamins / minerals in relation to MPNs .
From past posts, I think many of us discovered we had deficiencies and felt better after resolving them.
I love the book title "From naked ape to knackered ape" - sums me up in a nutshell!
I saw an NHS nutritionist years ago and was so disappointed with the conversation - she issued me with a standard diet sheet which suggested eating most of the foods I told her caused me problems! I didn't bother going back...
I'll certainly go down the blood test route just to see what I may/may not be deficient in as I can only guess right now. I'm just fed up of being fobbed off with more and more prescriptions which can't be good long-term.
Thank goodness for Black Friday as Amazon are going to be hit hard 😂
Thanks again for the information - I feel more positive about taking control and will at least be able to have a good conversation with the naturopath.
Sadly the NHS has lost to plot when it comes to healthy diet.
My mum has quite bad diabetes, really overweight, and was told 'it doesn't matter what you eat and it doesn't matter what you weigh' - quite shocking! I was with her when the diabetic nurse said that to her, just after I had brought up the subject of low carb diet. When I worked in NHS, diabetics got a completely different menu in hospital. Now everyone gets the same. Sad times.
Good you are being so proactive. Wish you well on your journey of discovery! I'm sure you'll find it fascinating and truly eye opening.
I was so shocked to read about your mother’s experience - that is truly wrong.
I had one of those NHS health checks at my GP’s the other week and was given an excellent bill of health, with the nurse mentioning my cardiovascular score was really low - this being based on a very dubious machine-read blood pressure and cholesterol results plus a few very general health questions! I just couldn’t be bothered informing her my risk was very much higher based on what my blood was like as this was the nurse who didn’t know what a naturopath was and when I explained she basically insinuated they were quacks!
I’ve got some books on order and look forward to becoming a bit more informed! It has taken me a while but, to be honest, I feel doctors are very good for a lot of things but they don’t truly know what our bodies feel like to us and a lot of the time we don’t fit into their precise little boxes.x
Sorry to hear of your ongoing health issues, and the difficulties you’re encountering navigating an acceptable quality of care.
I’ve read through the posts and you’ve had some really great advice. I would just like to add two things.
Firstly, I would strongly recommend a referral to Professor Harrison for ‘shared care’. Make sure you state you want shared care and not a second opinion. You clearly have symptoms that could be autoimmune related, and you need an expert opinion on the best treatment for your ET in relation to this. I have shared care with Guys. In addition to great care, I am sure it keeps my local haematology team on their toes too.
Secondly, my husband was told (many years ago) there was over a year’s waiting list to see a NHS rheumatologist. The NHS rheumatologist he was referred to also saw patients privately, so my husband made an appointment to see him privately and got an appointment the following week! After the initial consultation, he then became a patient of the said rheumatologist on the NHS. It’s well worth the money if you can access this route.
Your comment on shared care reminded me that I think this is what I’m on with Addenbrookes - they are involved in any major decisions, like the tweaking of Pegasys doses due to the shortage, due to being a specialist MPN team. I think it’s time I reminded my local hospital as the haematologists seem more general than specific, if you see what I mean. Thanks for bringing that up, my brain fog is so bad at the moment I struggle to live in the moment, let alone try to remember past events!
I think going privately seems the only route for that first rheumatology appointment, the cost being negligible compared to the long wait for an NHS appointment. I had private treatment earlier on this year for a different problem and it was all done and dusted in 6 weeks - it took the NHS a whole year to phone me to discuss ‘the next steps’!
Great to know that Addenbrookes are still involved in your care, I was under the impression it was a one off consultation. Might be a good time to request a ‘face to face’ with Addenbrookes.
I will certainly do that and thanks again for jogging my brain ☺️
The main reason I requested that appointment was due to feeling I wasn’t being listened to by the local team. I was extremely reluctant to agree to go back to them but now remember being assured Addenbrookes would still be involved if need be.
Thanks again - in recent months I have lost confidence, believing that maybe I’m just over-thinking things and need to pull my lady pants up. You guys have given me the courage to stand up for myself and really question what’s going on.
Now it’s time for my therapy session - an hour with my horse! Can’t ride her but I sure get good vibes just being around her 🥰
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