Probiotics.

[lindyloulou]

Wishing everyone on this fantastic supportive. Group a Very Happy Christmas and New Year. Can anyone tell me if I can take probiotics with interferon. Hydroxy as left me with a gut problem, cannot make any sense of what I am reading on the internet. Lynn

[hunter5582]

I am using probiotics while on interferons. Like you, hydroxyurea had an adverse effect on my GI system. I started while on HU and just continued thereafter.

[lindyloulou in reply to hunter5582]

Thankyou Hunter

[Tipsy2023 in reply to hunter5582]

Hi Hunter

I have also suffered from GI issues I have Sjogrens , ET on Hydroxy and Antiphospholipid syndrome but my medics all suggest IBS and dietary changes and do not appear to consider any link with conditions and symptoms.. how do I suggest a different approach ? I didn’t have problems the majority of my life .. I just seem to go around in circles with doctors and when asking at my most recent GP appointment could the condition and treatment contribute it would seem my Hydroxycarbamide was not listed on my notes and the doctor had to read through past letters before accepting I was on it .. I have often considered reduced blood supply if hyperviscous to the mesentaric blood supply could cause my symptoms Does anyone else have these issues …

It is very heartening listening to others on this site who are managing to control their symptoms and have more positive days .. I guess mine are a bit negative at the moment so hoping for better balance .in future .L

[lindyloulou in reply to Tipsy2023]

Hi L, I too am being tested for Sjogrens, it’s suspected just now not diagnosed. I really don’t no wether I am coming or going with all the symptoms, getting all the information over to doctors is a nightmare. Waiting on gynae, vascular surgeon, just seem Rheum, Opthalmology MSK team, obviously already seeing Haem due to ET. My gut was horrendous whilst using Hydroxy, settled within less than a week when off it. Sorry to hear you are having a hard time just now and hope you get everything sorted. Did the GI issues start after taking Hydroxy. Lynn

[Tipsy2023 in reply to lindyloulou]

Hi I too am under more than a handful of specialists. My GI problems seem to start as my platelets rose I now know though I didn’t for 7 years. I had so many diverse symptoms was Sjögren’s positive since 2011 but doctors didn’t agree , difficulty at times swallowing, salivary glands swelling had it until 2022 when new consultant could not understand why they did not accept positive Sjögren’s test for 10 years . I think so many things can be linked to a reduced blood supply or sticky blood the doctors at the MPN forum seemed to understand completely which was reassuring .i am not sure if Hydroxycarbamide has made a difference . I get lots of dizziness from time to time pre taking it but for first 5 months I was so dizzy with labyrinthitis like symptoms and had to take stemetil several times a day .L

[hunter5582 in reply to Tipsy2023]

You have a complex case that can result in a variety of symptoms from a variety of causes. I have never heard of hyperviscosity to the mesenteric blood supply as a cause of GI issues. Hyperviscosity certainly can cause a number of significant issues, however.

Sorting though the issues you bring up, there are some that can be addressed.

Hydroxycarbamide (hydroxyurea)(HU) has GI symptoms as common reactions. This is well documented in the literature. Given the other issues you are experiencing, timing may be the only clue as to whether the HU is contributing to the GI issues you are experiencing.

Most GPs would be unfamiliar with MPN symptoms and the adverse effects associated with MPN treatments like HU. This is outside of their scope of practice. It is concerning that your GP did not believe you when you said you were on HU. While it is understandable that your medical record may not be up to date, it is not acceptable for a doctor to disregard the patient's report of the medications they are taking.

If you are interested in using a probiotic supplement to see if it would help, that is your prerogative. You do not need a doctor's order to pursue that option but you would want to let your care team know what you are taking. Note that I consult with an Integrative Medicine specialist about the complementary health interventions I use.

There are some things you can do to help figure out what is going on.

Prepare a medication history with all of the medications and supplements you have taken. Include doses and start-stop dates. Also include known adverse reactions. Note: I go to all medical appointments with a list of all current medications and history of adverse reactions. This ensures my medical records are up to date.

Prepare a medical history timeline, showing when the symptoms you are concerned about occurred. Crosswalk the timeline with the medications you are/were taking. Note that these symptoms may be either the result of a condition or an adverse effect from a medication. Sometimes timing is the only clue. My GP says "the simplest explanation is the best explanation." If you did not have a symptom until you took a medication that has that adverse effect, the conclusion is straightforward.

I had adverse GI effects from HU. I started on probiotics to help deal with it. Unfortunately, these adverse effects did not resolve until I discontinued the HU. I ultimately switched to the interferons, Pegasys then Besremi. The interferons have been much more effective and far easier to tolerate than HU for me. Note this is how I reacted. We are all different. Due to the Sjogren's, you may not be a candidate for the interferons should you want to pursue other options to treat the MPN.

Suggest that you do a bit of medical detective work yourself. Set up the timeline and medications list. Research the known adverse effects of all the meds you are taking as well as the symptoms of the different conditions you have. Go to your next set of appointments with your care team with a written agenda and list of issues/questions. I expect this will be more than one appointment with more than one specialist.

Suggest that you consult with a MPN Specialist if you have not already done so. mpnforum.com/list-hem./ Your case is complex and you need a high level of MPN expertise to properly manage your treatment. You can discuss your treatment options with the MPN specialist who can best guide you regarding adverse effects and cautions/contraindications for each of your choices. You may wish to discuss whether Jakavi (ruxolitinib) is an appropriate option if HU is not viable for you.

Wishing you all the best as you move forward.

[Tipsy2023 in reply to hunter5582]

Many thanks

[Dane12]

Hi,

Due to some GI advese effects, I took probiotics for almost a year in parallel with interferon.

I stopped now as I did not observed any effect (positive or negative). The probiotics were of good quality and manufactured by a respected company. Unfortunately, no effect for me.

[lindyloulou in reply to Dane12]

Thankyou Dane

[Nikon7ii]

I use probiotics with interferon (Seed brand) and don’t forget the prebiotics that feed the probiotics. You can get prebiotics in onions, garlic, artichokes, etc. healthline.com/nutrition/19...

[lindyloulou in reply to Nikon7ii]

Thankyou, I do get lots of prebiotics from my diet. interesting read. Lynn

[Loubprv Volunteer]

hi Lynn

I have taken Optibac probiotics for years but I m not on interferon ( I ve been on HU for 14 years.)

They arrive live in your gut - many of the over counter ones die before they get there and are ineffective.

If you google optibac they have nutritionists you can talk to who will advise you. I highly recommend them. Louise was very good

I take immune support - there are others but I have histamine intolerance and they’re not compatible.

You’ll be fine with all of them I’m sure. Anyway give them a ring. Best wishes for a very happy Christmas and lovely healthy 2024. Louise x

[lindyloulou in reply to Loubprv]

Thank you Louise, these are the ones I have bought, and Thankyou for the advice. Lynn

[Loubprv Volunteer]

a pleasure Lynn. Hope they work for you x