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Just relapsed after 13 years. Wondering what the latest is in treatments... 3 months 2 days ago #72729

  • mcafiero
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13 years ago I was diagnosed with ITP, and went straight into a remission after tapering off my first go at Prednisone. I always felt lucky about this. And I always felt that it could come back at any time. And this week it did.

After doing some research, it doesn't look like much progress has been made in terms of treatments. I'm seeing the same old stuff. I am seeing TPO-RA drugs like Eltrombopag (Promacta) for the first time.

Anyway, trying to figure out what's new. I feel I got pretty lucky going into remission after prednisone back in 2009. Would love for that to happen again of course, but that would seem extra lucky.

Thanks,
Mark

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Just relapsed after 13 years. Wondering what the latest is in treatments... 3 months 1 day ago #72731

  • MelA
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Mark what is your count now?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Just relapsed after 13 years. Wondering what the latest is in treatments... 3 months 1 day ago #72732

  • mcafiero
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When I checked into the ER on Tues: 10K
Wed morning in the hosp: 1K 
Thurs it was 16K
Friday it was 26K and I was discharged. That's the last number I've seen. I go in for CBC on Monday AM.
I'm on 80mg prednisone right now

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Just relapsed after 13 years. Wondering what the latest is in treatments... 3 months 22 hours ago #72734

  • MelA
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You did relapse for sure, sorry!   Hopefully the prednisone will treat you well and give you another remission!   A tetanus booster dropped mine back down years ago, I refused prednisone and was given Win-Rho and that did the trick - not sure if they even use that any more! Keep us posted - hope you get some good news on Monday!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Just relapsed after 13 years. Wondering what the latest is in treatments... 2 months 4 weeks ago #72736

  • mrsb04
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80mg Pred....you have my sympathies. I hope it works and you can get off it soon 

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Just relapsed after 13 years. Wondering what the latest is in treatments... 2 months 4 weeks ago #72738

  • mcafiero
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Thanks. Me too. I feel normal all the way until 10 am when I take this drug. Then the rest of the day is just a rollercoaster. I start tapering off starting Saturday. You really need to be super self aware about this drug while taking it. 

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Just relapsed after 13 years. Wondering what the latest is in treatments... 2 months 4 weeks ago #72745

  • midwest6708
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I hope your course of steroid will spark the same kind of remission you got from it before. 

You say the TPO-RA drugs are new to you.  I'll tell you that I didn't decide to take one until it had been in wide use for at least 10 years.  It was just about that when I started NPlate, the weekly injection form of TPO.  I've been taking it more-or-less successfully for 8 years.  Besides NPlate and Promacta, there is now another of this type drug called avatrombopag (Doptelet).

Most recently I think, fostamatinib (Tavalisse™) has been introduced.  Rather than being a platelet booster, it aims to correct platelet destruction.  

You can read about all of the treatments currently offered on this PDSA website page ~ pdsa.org/treating-itp.html ~ and on the links connected to it.

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Just relapsed after 13 years. Wondering what the latest is in treatments... 2 months 3 weeks ago #72749

  • mcafiero
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After tapering from 80mg of pred to 60, four days later my count dropped from 80 to 57.
So my doc has cleared me to run a 10K I entered tomorrow. I feel uneasy about this but I also don't want to compromise my quality of life so I think I'm going to go for it.
Back to treatment discussion, we're checking again on Mon, I'm sure it will be low, still. And then he's talking about putting me on Promacta.

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Just relapsed after 13 years. Wondering what the latest is in treatments... 2 months 3 weeks ago #72752

  • mrsb04
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Go for it. I gave up letting ITP rule my life ages ago.
I'd ask for Avatrombopag (Doptelet)  as there are no dietary restrictions like there are with Eltrombopag (Promacta) 

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Just relapsed after 13 years. Wondering what the latest is in treatments... 2 months 3 weeks ago #72753

  • mcafiero
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What are the dietary restrictions? Is it calcium? Otherwise, is Avatrombopag pretty much the same class as Promacta?
I downgraded from the 10K to the 5K as a compromise to my wife and mom who don't want me to run this race. So we met in the middle. I'm hoping to win my age group. Will have a pocket full of tissue in case I get a bloody nose (happens on occasion in my right nostril when I run hard).
Do you think they'll try to get me to do a bone marrow biopsy? My doc admitted that this really feels like it's definitely still ITP since I'm feeling healthy and good and that it came on so fast and not really gradually. So I hope not. 

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Just relapsed after 13 years. Wondering what the latest is in treatments... 2 months 3 weeks ago #72755

  • JJ
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The real change since you last treated low counts is that they don't tend to use steroids for long now. If it doesn't immediately work they move on, often to a TPO. Calcium reduces the effect of Promacta. They used to say not to ingest calcium foods four hours before or after taking it, but that got reduced to say to take it two hours before and four hours after calcium unless it's changed again. Your haematologist sounds like he knows what he's doing and is following current protocol so if it were me I'd take his advice.

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Just relapsed after 13 years. Wondering what the latest is in treatments... 2 months 1 week ago #72774

  • Chad89
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Hey Mcafiero. My name is Chad. I too was in remission for 13 years. I’m 2007 I had ITP at the age of 18 and was put on prednisone for a month or so. Everything went back to normal and everything was fine until 2020 when I noticed the same petechiae on my feet and bruises. This time it was harder to get it under control. Steroids didn’t work and then I did the IVIG for a temporary fix. My doctor had me go in for two rounds of Rituxan and so far that has been holding it seems. It’s been a little over two years since then and my counts have been in the high 200-300k range. Please let me know if you have any questions or just want to talk. 

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Just relapsed after 13 years. Wondering what the latest is in treatments... 2 months 1 week ago #72775

  • mcafiero
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Thanks, Chad.
It seemed the Prednisone wasn't doing much for me this time around, but now I've been thrown a curveball. Here's how it's gone so far:
80mg /day week 1 (that sucked) - counts at 80
60mg/day week 2 (that sucked, too) - counts at 57
40mg/day week 3 - counts went up: 122 "the curveball"
I'm on 20mg/day now. Getting my next counts on Tues. So far no symptoms 
If for some reason they crash down again lower than 30, sounds like my hematologist is interested in trying Promacta. But it sure would be nice to see the counts continue to rise back to my normal level. Normal for me for the past few years has been in the 160-170 range.

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Just relapsed after 13 years. Wondering what the latest is in treatments... 2 months 1 week ago #72776

  • Chad89
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Yeah the prednisone is not fun. Hopefully they hold at a good level. Fingers crossed for you. So weird that after 13 years something triggers it right? 

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Just relapsed after 13 years. Wondering what the latest is in treatments... 1 month 3 weeks ago #72808

  • dmurashi09
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Hello, I'm new to the group. Like Mark, I was in remission for a long time then ITP recently returned unfortunately.   I was diagnosed with ITP in 2011. Routine blood work during annual checkup revealed platelet count of 6K. Was put on prednisone then dexamethasone for 3 months.  Counts returned to over 200K for 11 years until early this year (2022) routine blood work showed my count was 85K.  Over the course of the next 3 months it remained between 70-85k. Hema doc said he didn't treat unless counts were below 30K which I was glad to hear. I had a bone marrow biopsy and MDS FISH panel in March which came back normal.  
Then, one month ago I noticed purpura spots on my mouth and petechiae spots on various areas of my body.  Went to the ER and found out my count was 2K.  Was admitted and started on 700mg IVIG and 40mg dexamethasone for 5 days.  My count jumped to 232K day after discharge. Quick 3 day taper from dexamethasone. 10 day followup appt showed my counts back down to 22K.  Doctor started me on 80mg prednisone per day.  2 weeks followup my count was 64K. The doctor wants me to continue to take 80mg/day for another 4 weeks.  I left the appointment, did some thinking and more research on side effects of corticosteroids and have decided I am going to begin tapering off.  I am very concerned about bone loss/osteoporosis among other side effects.  I am also going to find a 2nd opinion regarding treatment.  If my counts remain where they are now without meds, I will choose to monitor rather than take drugs. If they drop below 30k I will request a TPO therapy.   I refuse to stay on prednisone.  I'll post updates on my jouney and share any learnings.  I wish everyone here the best and am thankful to have found PDSA. 

Derek 

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Just relapsed after 13 years. Wondering what the latest is in treatments... 1 month 3 weeks ago #72809

  • mcafiero
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I feel you on all counts, Derek.
I also HATE prednisone. I have two more doses of 5mg tomorrow and Monday, then I'm done. But I almost think the month and a half of Prednisone, at least for me this time around, was a good program. Here's how it went for me:
Discharged from hospital at platelet count of 47 at 80mg Pred
following week my platelets were 80, and I tapered to 60mg
Following week my platelets were down to 57. Tapered again to 40mg
Following week platelets went up to 128, tapered to 20mg
Following week platelets were up to 137, tapered to 10mg
Last week they were 149, and I've now tapered to 5mg
It makes me wonder if the short-term Dex treatment doesn't really give your antibodies a chance to "forget" or reset from thinking platelets are an invader. I'm no doctor or scientist, so I have no clue.
But if I were you, as much as I also hate Prednisone, it might be worth giving that a month. I don't think a month is enough time to give you osteoporosis. 

On another note, while on Prednisone, I WAS concerned about diabetes coming out of it. So I cut almost all carbs from my diet, basically a keto diet (although you will not ever get into ketosis). I didn't gain weight or get a moon face and my blood sugar didn't really seem affected on that diet. I also exercised every day. 4 mile runs 5x per week and lifting at the gym 2x per week.

Also I read up about the role of gut health and the immune system and it seems like there's a significant relationship. So I started taking daily prebiotics (fiber, basically) and probiotics.  Again, not a Dr. and I never asked my own dr about it. So you might want to ask yours before following any of my layman advice.

Good luck whatever you decide! Keep us posted. 

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Just relapsed after 13 years. Wondering what the latest is in treatments... 1 month 3 weeks ago #72810

  • dmurashi09
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Hi Mark,
Thanks for sharing your prednisone regimen and counts.  Your body's response is definitely encouraging.  I hope you go into a long remission again.  Something you mentioned resonated as I was thinking the same thing: "It makes me wonder if the short-term Dex treatment doesn't really give your antibodies a chance to "forget" or reset from thinking platelets are an invader."   I've read studies that suggest the opposite, that short pulses of dex are effective but as you know, everyone with ITP responds differently to therapy.  
Regarding prednisone-induce bone loss, I've read the majority of bone loss occurs withing the first 3 months of taking the drug. I've read it's irreversible but also read the opposite on other forums where people have taken Boniva or equivalents and have returned to normal. And I've also read some patients have normal bone scans while others show bone loss. I guess the only way to know for sure is to get a bone scan which I may do down the road a little.  The main reason I am concerned about bone loss is because I have bilateral hip implants that were installed just over 5 years ago due to osteoarthritis resulting from decades of playing sports and working out.  I'm 57 now and still active but don't do heavy weight lifting or running.  Mostly walking, hiking and body weight exercises now.   My concern with my prednisone intake is that I've been on 80mg/day for 19 days already and my doc wants me to continue with this dose through Jan 4th.  And then the taper. I'm not comfortable with this.   The good news is that my metabolic panel showed my glucose at 80 this past week.  I generally eat pretty clean and try to avoid simple sugars and processed foods.  I've been a proponent of probiotics for the gut biome for a long time. I have a weird history of auto-immune diseases (3) that suddenly go into remission for long periods of time...like the ITP.  Probiotics, I feel, played a key role in keeping my GI disorder in check and my GI doc agrees.   I saw my GP yesterday to request an H Pylori test as well as another CBC.   The H Pylori test if anything to rule out a possible contributor/cause of the ITP.   Results pending.

Thanks again for sharing.

Derek

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Just relapsed after 13 years. Wondering what the latest is in treatments... 1 month 3 weeks ago #72813

  • mrsb04
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Derek
Good for you on tapering ...High dose Prednisolone is horrendous. . 

Below is a link to the updated guidelines. I wonder if your current haemo has actually read them. Going for a second opinion is a very good idea. 
ashpublications.org/bloodadvances/article/3/23/3829/429213
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Just relapsed after 13 years. Wondering what the latest is in treatments... 1 month 3 weeks ago #72814

  • dmurashi09
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mrsb04: Thank you for sending the link to the ASH treatment guidelines. Very informative.
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Just relapsed after 13 years. Wondering what the latest is in treatments... 1 month 3 weeks ago #72815

  • CindyL
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I couldn't handle being on 60mgs when I was first diagnosed.  I finally asked to be reduced, so my doc put me on 30mgs.  That was bad enough. 
I did get a second opinion and that doctor backed up what my hema doc told us.  I'm not sorry I had the second opinion done, though.   The only difference between the two doctors is the second one told me he would be pushing for a splenectomy and my main one wasn't.  I had to leave my city for the second opinion because my hema here is the top doc, and the other one was the top doc in his city.

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Just relapsed after 13 years. Wondering what the latest is in treatments... 1 month 3 weeks ago #72816

  • mcafiero
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Man, Canadian docs are so trigger happy with the Splenectomy “treatment”. I saw another story somewhere about a Canadian patient and that was suggested right away, too.  

Back to Derek, I didn’t realize you are being asked to be on 80mg for 19 days. That’s straight up abuse. I think my hema would have you tapering way faster with a plan to try promacta if you start to dip towards 30 in platelet count. 

How are you feeling? At 80mg and even 60 I was a straight up crazy person. 

Def worth asking about. I’d be uneasy to put myself on my own tapering plan but I appreciate people who take control on their own like you do. 

keep us posted!

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Just relapsed after 13 years. Wondering what the latest is in treatments... 1 month 3 weeks ago #72817

  • dmurashi09
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19 days is when I decided to start tapering.  My doc wanted me on 80mg for 42 days (6 weeks) not including taper.   I feel okay, not overly wired or crazy but definitely not normal.  I sleep ok, about 6 hours.  Apetitie isn't overly crazy either.  I'm going to call my doc tomorrow and tell him I'm done with prednisone.  Other than the potential for exessive bleeding or needing a medical procedure where bleeding is a risk, I am generally asymptomatic when my counts are as low as 40-50K. No bruising, petechiae, purpura, etc.  In this case, I think observation without treatment is the best for me. If my counts drop low, I'll ask for a 2nd line therapy like one of the TPO-RA meds.   Does anyone have any thoughts on IVIG?  It works fast but is short term which is good for critically low counts but I'm not sure whether regular infusions are the way to go.  The day after I discharged from the hospital last month I had a severe reaction. Worst pain I've ever felt in my back and abdomen along with splitting headache that landed me back in the ER for a night.  First urine was the color of coffee in the ER but kidney tests came back normal.  Urine progressivley returned to normal after each passing. They never determined what the cause of the pain and dark urine was.  

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Just relapsed after 13 years. Wondering what the latest is in treatments... 1 month 3 weeks ago #72818

  • mcafiero
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No way. I also went to the ER for the coffee colored urine. I thought I had Rhabdo because it was the eve after a really hard workout with my cycling team, as I used to race competitively. Of course I was in remission at the time or I would not be on the bike. But kidney tests also came out normal. I also had extreme cramping in my abs and legs that afternoon as I was recovering from my ride. 

never learned what it was but interesting to hear it has happened to another person with ITP. 

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Just relapsed after 13 years. Wondering what the latest is in treatments... 1 month 3 weeks ago #72824

  • dmurashi09
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update:  My counts today were back down to 16K.  They were at 47K just Friday and 64K three days prior to that.  Both those counts were when I was on 80mg of pred.  Then 4 days at 60mg starting Saturday. 40mg yesterday (Wednesday).   Back up to 60mg today based on doctor's recommendation while he puts in an order for a TPO.  Nplate not covered by my plan but Promacta and Tavalisse are.  Of the two, it appears that Promacta has a higher rate of response for most people so I'll probably go that route.  I hate reading about the side effects of all these drugs but what is the alternative when your counts are <20K?   Hoping to get started on the promacta and off of prednisone asap.

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Just relapsed after 13 years. Wondering what the latest is in treatments... 1 month 3 weeks ago #72825

  • Chad89
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Have you thought about Rituxan?

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Just relapsed after 13 years. Wondering what the latest is in treatments... 1 month 3 weeks ago #72826

  • dmurashi09
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Hi Chad, I have thought of Rituxan (rituximab) and would be open to it. My hematologist does not like it as I have mentioned it to him before citing side effects. I believe you had a durable response after taking it if I recall.  Were there any noticeable side effects?
My current like of thinking regarding escalation of therapy is this:
1a. Prednisone/decadron - done with these (except for emergency rescue,...but I'm thinking it is losing its efficacy with me)
1b. IVIG - Only for rescue or prior to a medical procedure/surgery.  Was effective for me but generally is not considered a therapy to induce a durable response
2. TPOs - Unsure of if I will need to try more than one. Depends on how ITP responds.
3. Rituxan - seems to have a relatively high rate of durable response as you can attest to
4. Splenectomy - I will hope to avoid this given the issues it can cause. 

As mrsb04 put it, when the side effects of treatment become worse than the symptoms of the disease being treated, it's time to stop.

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Just relapsed after 13 years. Wondering what the latest is in treatments... 1 month 2 weeks ago #72834

  • Chad89
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No side effects that I noticed but hard to say. I definitely did not like prednisone. It’s so weird that sometimes one treatment will work but then won’t the next time. I’m just trying to eat organic and all natural while staying away from processed foods. I try not to eat much sugar. Also, sleep is very important and I’m on the Coimbra protocol right now. Taking Vitamin D3 with K2 and a few other vitamins. Not sure if it will help forever but I’m grateful for each day. 
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Just relapsed after 13 years. Wondering what the latest is in treatments... 1 month 2 weeks ago #72835

  • mcafiero
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If it comes to it, for what it's worth, my second line of treatment will be promacta. My last counts after a week of 5mg prednisone were 180 so I was right in the normal range. I'll be interested to see what those numbers look like on Monday after being off Prednisone. If I go back down below 30 it will be promacta.

I'm with Chad, though. I've always been on a Keto diet but I think I want to start doing Whole 30 which is basically just foods that are not processed, no sugar at all, really. Also I'm doing OMAD - one meal a day.  But my OMAD is improvised because I have a multivitamin in the AM with 45g of collagen protein. Another 45 mg of collagen protein at lunch, and then my one meal in the evening which is a protein, and a natural carb like potatoes or quinoa or something.

One thing I plan on doing if my platelets normalize after being off prednisone is a keto diet for about 5 days until I get into ketosis, and then a 3 day water fast (peterattiamd.com/ama13/), just to sort of reset my system, get into a state of autophagy and then back to the OMAD Whole 30 program on a clean slate.

Also I've been taking prebiotics (fiber, basically) and probiotics as mentioned earlier in this thread.
Like Chad, I don't know what impact any of this will have on ITP but I'd be doing it regardless just because it's a healthy way to live.

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Just relapsed after 13 years. Wondering what the latest is in treatments... 1 month 2 weeks ago #72836

  • mcafiero
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Tell me more about The Coimbra Protocol - are you doing this with the assistance of a Dr or just taking a ton of Vitamin D?

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Just relapsed after 13 years. Wondering what the latest is in treatments... 1 month 2 weeks ago #72837

  • Chad89
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I agree with you. I’ve heard that intermittent fasting can give beneficial to individuals with autoimmune. Autophagy being the goal.  I am seeing a Dr that’s registered for the Coimbra Protocol. I’m only on 5,000 IU’s of Vitamin D a day so not too much. He wants labs drawn in a couple months to see if I need to up it or not. There’s a strong link between all autoimmune disorders and an absorption issue with vitamin D. If you go to the Coimbra protocol website they have a list of Dr’s for different areas. They also don’t require you to go in person as almost everything is via Zoom. I honestly just want to try and live a healthy lifestyle where I don’t need to take strong medications and aside from what we have I believe it’s beneficial to anyone to live and eat cleaner. I’m only 33 and I’m hoping this can limit the recurrence. 

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