I don't post often, but I have been regularly reading some of the posts for the last couple of years. I really appreciate all of the knowledge that everyone is willing to share!
Since my bio contains my story, I won't go into any of those details here other than to say that I have PV (JAK2+) plus long-standing thyroid issues. I'm on an anticoagulant and have a phlebotomy every 4 months or so.
My post today is related to post-COVID inflammation. I came down with COVID the week of April 4th -- dry, raspy throat/voice, runny nose, fatigue, more pronounced body aches than I usually have. Some chills, but no real fever. Just a bit of a tickly cough. Note that I've had two vaccines plus one booster. I started feeling better on day 5 and by day 8, I felt much better and figured I had "weathered the storm". Then on day 10 I started feeling stiffness and soreness in my left hand. Since then the stiffness and soreness has progressed to most of my body and joints -- hands, wrists, shoulders, knees, feet. I've seen my primary health care provider and was just told that it will hopefully go away on its own but to come back and see them in 6-8 weeks if I hadn't improved. My naturopath has put me on some extra anti-inflammation supplements within the last couple of days. I did also have my inflammation markers tested and they are no different than what they were pre-COVID. I can function, albeit slowly and with discomfort.
Just wondering if anyone else with PV (of one of the other MPNs) has experienced anything similar. I know the issues I have with my thyroid may come into play in terms of auto-immunity, but I know I've also read that there is an auto-immune component to MPNs as well. I just had my annual meeting with my MPN specialist in February, but do have an appointment with my local hematologist this week. Not sure there's anything they can do though....
I'll post this in the Thyroid forum as well.
Thank you for listening.
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blue_reader
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I did not experience anything similar in terms of inflammation post-COVD. I did experience fatigue for about 2 months. The notion that you could have increased inflammatory symptoms post-COVID is a reasonable supposition. mThere is some research on that issues. Here is one example. forbes.com/sites/williamhas...
MPNs are at the core inflammatory disorders. We commonly have elevations in inflammatory cytokines due to the deregulation of the JAK-STAT pathway. The common inflammatory markers may or may not reflect elevations in these cytokines. There are other tests that can be run, but there are many inflammatory cytokines. You may or may not test for the right ones if this is what the issue is.
I expect you are already doing what you can to reduce the inflammation. You did not mention which anti-inflammatory agents you are using. I have had great success with curcumin. I hope you find something that will help reduce he inflammation while your body throws off the aftereffects of COVID.
Hi, Hunter.....Thanks for the reply. Yes, I'm doing what I can to reduce inflammation. I take an anti-inflammatory supplement that contains boswellia, turmeric, bromelain, and quercetin. I also take a boatload of other supplements that I will need to refine over time.
I'm thinking I have some autoimmune issues that have been triggered by the covid infection given that I do have Hashimoto's thyroid disease. I plan to make an appointment with my functional medicine doctor to discuss. I really hope these symptoms dissipate over time.....
Glad to hear you have a Functional Medicine doc on your care team. That sounds like an excellent plan to head in for a consult ASAP. Given the Hashimoto's + MPN + COVID - not too surprising there might be some linger effects. Inflammation is not our friend.
I would note that it took 2 months for my post-COVID fatigue to resolve. Hopefully the uptick will fade for you over time.
Firstly, I’m so sorry that you are experiencing this, but don’t give up your search. I want to kick your doctor for sending you away so disrespectfully!! Very often, an infection triggers other conditions that are just waiting to be triggered. We are all loaded with health imbalances and infections just waiting to go. This is why I propagate a change in lifestyle. Note: I am so happy you have a functional doctor and naturopath. But, don’t take too many supplements at once. They can also interact with each other.
I have ET, Hashimoto, Mediterranean anaemia (never goes away). I used to have allergies, eczema and all kinds of other bothersome symptoms.
After my ET diagnosis, my functional doctor put me in the Auto immune paleo diet. I’ve been on it since then, almost 5 years. LIFE CHANGING!! I also eat as much organic as possible and banned ALL chemicals out of my home:cleaning agents, creams, perfumes, soaps, etc. Only natural stuff. I also take excellent quality supplements. Mg, Vit C with quercitine,/OPC/manganese/Zinc, Acetyl l-carnitine for energy, B complex, and 60,000IEs of Vit D weekly!!!. I also do stinging nettle tea to balance the acidity in my body. Bone broth simmered 24hrs. to heal my gut. I make 3kg of beef bones in 4 Liters of water. I filter, put it in jar while at 100C and it keeps in Fridge for about 6 weeks. I put it in everything. Salt baths to detox the body through the skin. By the way, check your liver! Turmeric is not good, if your liver is having a tough time working. Once the liver is ok again, then it’s ok. So do liver cleansing.
I cannot begin to tell you how many symptoms and conditions disappeared. My Hashimoto is 50% gone. I now take half the T4 I used to take and it’s bio identical bovine hormone.
Regarding you immediate condition:
Epstein Bahr Virus?
Other Chronic viruses activated?
Lupus?
Multiple Schlerosis?
Lyme? My 18 yr old suffered from symptoms similar to yours for over 3 years and no one satisfied me with their stab in the dark diagnoses that didn’t really make sense. We finally found 4 active stems of Lyme in her!! 90% of Europeans and North American carry Lyme, those with immune health problems. I have it too. Now she’s under bio Resonanz treatment and she’s doing well.
No matter what, cleaning up your diet and reducing chemical load is the first line of action to reducing inflammation. Make sure digestion is working well and so is the toilet. No one likes to talk about this but is fundamentally important.
Lastly, find beauty inside yourself! Breathing exercises, taking walks in a park or forest, praying, meeting good friends, laughter, turn off the news!
Thank you, Anag! Yes, we really do have to dig down deep and investigate all possible causes for our health issues. I agree diet is huge and am currently working on that -- I feel I eat a relatively healthy diet, but there is always room for improvement. I did test positive for a chlamydia pneumoniae infection via PCR test a couple of years ago so am thinking that covid has caused it to come out from hiding. I will be discussing with my functional medicine doctor at an appointment in the near future and continue to work with my naturopath as well. My inflammation markers (ESR, CRP) became very elevated and I ended up having to go on a 17-day course of prednisone and tomorrow is my last day. It gave me huge relief since I had become essentially crippled; however, as I've been weaning off I can feel the symptoms returning which is not good. As well, bloodwork from yesterday show my CRP rising again after dropping initially when I started the prednisone. It gets exhausting trying to figure it all out and work towards wellness. Today's a down day for me, but tomorrow's a new day and I'll continue moving forward. Thank you for your words of wisdom....much appreciated
Your Covid symptoms are classic for Omicron, esp Ba2. There is not much info on its long Covid effects yet, so we will hope to learn more as time passes. Most likely it will be less severe that the original since it's generally more mild, but this is not proven.
My husband and I both had the original at the very early start of it all and we are still long haulers after 2+ years, as is my office mate. But it's not a big problem for us these days.
I see in your profile you get the tingling etc. Has this ever before approached closer to pain? Mine can sometimes. I found the supplement NAC helped tingling, but not much else, I am not currently on it.
Have you taken any blood counts recently? It's worth to know whether any obvious things have changed.
Hi, EPguy....Wow, long haulers after 2+ years! Glad to hear though that it's not currently a big problem for all of you. Yes, the symptoms I had were classic Omicron symptoms from what I've read/heard.
Re: the tingling, no, it has never become anything painful -- just weird sensations that I've learned to live with over the last couple of years. I keep wondering if reducing my platelet count would help since many of my symptoms started at the beginning of my PV journey when my platelets were ~450, but I haven't gone down the cytoreduction route yet. Having said that, I see that you're on Besremi and still have the tingling, so maybe reducing the platelet count wouldn't help. Hard to say since we're all different.
I had a phlebotomy last week so did have recent bloodwork. Nothing obvious that had changed. Fairly typical counts for me.
I did see some articles about reactive arthritis after covid, so I'm going to check with my functional medicine doctor about that.
My hubby by coincidence is having a real bad day today. It still does happen. The only consolation we have is getting both infected and vaxed gives the best "hybrid" immunity. But I sure don't suggest the 1st one on purpose.
My tingling is light, and if it were my only problem I'd be over the moon.
I see you wrote your bad effects were related to PLT levels. If you are clear about that connection, getting them lowered seems a good idea. The chemo Anagrelide is specifically for that, but you would do that only with careful Dr discussion.
As you see on the forum, some members do best with PLT well in the lowest ranges. I've found less than ~250 is not good for me.(but so many other variables are going on too)
Yes, given that I started having various symptoms when my platelets were between 450 and 500 already, I'm thinking that maybe I'd feel better if the count was lower. I haven't wanted to go down that route quite yet since I'm "only" 57, but it's definitely always in the back of my mind. Re: Anagrelide, I have had some atrial fibrillation in the past so I don't think that would be a recommended medication for me.
Hopefully these post-COVID symptoms are a thing of the past for all of us one day....
Hi Blue_readerCovid is a real hit and miss with post symptoms.
Briefly , I have ET since 2016/7 with suspected PV? Haem tests for each on alternative appointments treated with HU , 500mg x 6 days a week and on anticoagulant rivaroxaban.
Liver function fluctuates and high levels of macro cytosis -enlarged red cells probably due to HU.
I had Covid early April struggled with burning chest, dry cough, runny nose, headaches and hot /cold feeling and aches and pains a little more than usual !
I had a fall landing hard on my back 2 days after iso finished went to ED for investigation as breathing became increasingly difficult with lots of pain in chest and back, no broken bones just heavy internal bruising and sent home on pain killers which I’m still on 3 weeks later!
I had a scheduled Echo Doppler the day after I had accident ( chest pain previously) which showed fluid around my heart - Pericardial Effusion - Haem is unsure whether is related to having covid or the fall ?
I’m finding bruising takes so much longer to go away than normal especially the last few years
Any thoughts or similar post covid complications are a wait and see I suppose, really don’t know much about this any one else have similar ?
Oh boy, so sorry to hear about the covid and then the fall. Yes, I imagine it’s hard to determine whether the fluid is related to covid or the fall at this point. Hopefully it does clear up for you soon and hopefully the pain fades away as well. No fun at all!I became essentially immobile with stiffness and pain everywhere. I only took Acetaminophen at first since I’m on an anticoagulant. Did nothing. I was then prescribed a PPI for my stomach so that I could more safely take ibuprofen. It only helped a very tiny bit. Two days ago I was put on a short-term course of prednisone and that has finally provided relief for now. A little worried my immobility returns once I’m finished the short-term course, but only time will tell. My primary practitioner is working on getting me a rheumatology referral assuming covid has triggered something in me. There are so many post-covid issues I’m becoming aware of from others. The acute phase of the illness wasn’t too bad for me but I never expected this to happen afterwards!! All the best to both of us.
Hi I am currently going through this but also as well as pain getting episodes of severe muscle cramps and spasms and on week 9 still not well at all - like you I felt good after 5 days, symptoms were ok with covid but then I collapsed about day 12 after positive test! As my gp won’t refer me to a long covid clinic until 4 month after positive test i have gone private through work as they have been really supportive and seeing an endocrinologist in London - I had a zoom call last night and she has ordered a load of bloods which both a and e and my gp haven’t checked - also said that blood tests should be done first thing and fasting before hand as food even a herbal tea can alter tests so they provide fake negatives as such and again when had the tests I did they should have treated this way - she is looking at thyroid/cortisol/b12/vit d and many others in particular - I am in peg interferon and my symptoms flared up after starting this treatment again as my consultant told me not to take it while I was positive with covid - interferon can cause thyroid issues and auto immune problems and my family do have a history - I would really press for more blood tests or referral if you are still unwell
What anti inflammation tablets have you started as sounds really interesting - my gp said just take a diarolyte when my muscles feel week - I can send you the list of bloods they have ordered if you like? I’m in London next week for these and then having a follow up call - just want to know what’s going on as I’m sure you do - take care and keep pushing
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