Skin burning and tearing feeling when stretching... - MPN Voice

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Skin burning and tearing feeling when stretching skin

Anag profile image
Anag
16 Replies

For the last few months my skin is becoming increasingly sensitive. When I crouch down, for example, I feel that the skin on my buttocks, thighs and knees is tearing and burning. Sometimes it lasts up to 3 minutes even after I stand up. Some days it’s worse than others. My general practitioner and haematologist don’t have a clue. I know that Anagrelid hurts the collagen in the body, but I’ve been drinking 24hr bone broth almost every day for more than 2 years in order to combat that side effect. My skin is not dry. Creaming my skin with emollient, organic skin care doesn’t make a difference. I’ve also noticed that the skin on my hands is also more sensitive, especially when I carry bags of groceries.

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Anag
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16 Replies
Applesnpears profile image
Applesnpears

Who told you that Anagrelide "hurts" the collagen in your body. Were you having symptoms that you discussed with your doctor?

Having bone both every day may be contributing to your current symptoms. Perhaps you should consider reducing/ stopping the bone broth for a while.

Anag profile image
Anag in reply to Applesnpears

Thank God I have a doctor with whom I can discuss everything and she takes time and is very thorough. Collagen and heart problems are two known side effects of Anagrelid. I’ve read it and my doctor also said it. Bone broth can be taken every day. I used it to heal my leaky gut and fix my knees and other orthopedic problems. The burning started at the time I stayed off the bone broth for 3 months. July/August/September. So it’s definitely not that. My skin also got looser. During this time my knees also got more sensitive and stiff. Since October I have taken broth 2-3x weekly. I’m wondering if this has to do with toxins. I got the last 6 amalgams (they were huge) out in October/late November and Two weeks ago. I’ve been detoxing the mercury and the Aluminium that was dangerously high in my body. My doctor has never has a patient with this.

Wyebird profile image
Wyebird in reply to Anag

How did you get the mercury and aluminium in your body? What brought the doctor to investigate for these? X

Applesnpears profile image
Applesnpears in reply to Anag

I can't find anything to suggest that Anagrelide can adversely affect collagen. Do you have a reference that others can assess?

Glad to hear that you are not taking bone broth every day as you had first suggested. Have you asked for a referral to see a dermatologist?

Anag profile image
Anag in reply to Applesnpears

The collagen problem is not usually listed as a side effect but Anagrelid works by also inhibiting thrombocytes’ collagen from making them stick together. But this works throughout the body, as well. If you look at really scientific websites on Anagrelid, this info is listed. Unfortunately, I’ve no time to research again.

Bone broth can be taken everyday for a lifetime. It’s really useful. All my doctors suggest it. It’s just 2 tbsp a day. Cheers.

Applesnpears profile image
Applesnpears in reply to Anag

I know that Anagrelide acts to reduce clotting caused by platelets and collagen interacting but that does not mean that Anagrelide "hurts" (as you put it) collagen in the rest of your body.

It would be unfortunate to create concern about Anagrelide based on a misunderstanding.

I hope a dermatologist can help you understand what might be happening to cause the burning sensation in your skin.

Anag profile image
Anag in reply to Applesnpears

All 5 haematologists/oncologists that I’ve consulted and my other doctors have confirmed that the collagen is impaired by Anagrelid. I have also read about it. I have the right to discuss that here. is it the word „hurt“ that bothers you? I couldn’t think of another one at the time. I would never pass on info here that does not come from reliable sources or studies.

All medications have side effects. Even paracetamol and yes aspirin. The important thing is that they do less harm than good. It is important to raise awareness if we want to be as health as possible and work against what meds do to us. Ie. When we take antibiotics, we must rebuild the good bacteria that are killed off by taking probiotics. In countries like Korea, every package of antibiotics automatically comes with probiotics to counteract the harm they do. I do the same with bone broth and so do others who take Anagrelid.

I never intend to upset anyone. I only wish to help and be helped.

Applesnpears profile image
Applesnpears in reply to Anag

Anagrelide does inhibit/impair collagen induced blood clots formed by platelets but for people with too many platelets in their blood that is a good thing.

My concern is that you are suggesting Anagrelide adversely affects collagen throughout the body but there is no published evidence for this.

Perhaps you could ask one of your doctors to provide a reference to help others put what you've said in context.

Creating unjustified concerns is not helpful and potentially harmful.

Applesnpears profile image
Applesnpears in reply to Anag

Platelets/ thrombocytes circulating in blood don't have collagen themselves. They do stick to collagen at the surface of exposed / damaged blood vessels and fatty plaques deposits on the surface of blood vessels. Once attached to the collagen the platelets become activated and cause other platelets to join in and form a clot. Clots can help stop bleeding from damaged blood vessels but clots forming elsewhere can be problematic.

Anagrelide reduces the tendancy of the platelets to stick to any exposed collagen reducing the risk of unwanted clotting. It does not act directly on the collagen itself.

I hope this explanation is helpful.

Wyebird profile image
Wyebird

Sorry to hear about your ailments I do hope all is sorted soon it sounds awful.

I too am on anagrelide I was totally unaware it damaged the collegen. I’d better start using q10 body lotion.

Thank you

Anag profile image
Anag in reply to Wyebird

Dear Wyebird,

Anagrelid somehow works through stopping the collagen on the thrombocytes walls from sticking to each other. Collagen is in every cell. We all associate it only with skin, since the market accommodates to what we “see”. It’s in every cell wall in our bodies: heart, all organs, muscles, etc. Therefore, we must support. I was taking bone broth (I cook organic beef or chicken bones for 24 hours and then store in airtight jars in a fridge for up to 2 months. I drink 2 tablespoons each day. Full of collagen and minerals too. Super healthy. I stopped doing that last June to October then started more off than on since.

I’ve had the burning/tearing sensation since November. I think I found out what it is. Myofascial Release Syndrom. Lack of collagen, movement and hydration. Yup! The more burning I had, the more I stopped moving, now my fascia are stuck. When I move there are thousands of micro tears and then redness. Hence probably the huge jump in thrombocytes in December. I went from 641 to 941 in 2 months! No one knew why. I think this is a plausible theory. Let’s see what my next blood test in Feb will say. I will start trampoline to get my lymph system going, my detox mineral baths, exercise, water and bone broth again. Time for more fine tuning.

I see you’re also ET CALR and on Anagrelid. But I’m not on the HU like you, since I have inborn anaemia and that would really hit me. Until now Anagrelid is working and I take 3 and 4 alternating daily. I followed you so I can keep in touch with more info, since we are so similar! 🙂 all the best. Thanks for writing. Anag

Wyebird profile image
Wyebird in reply to Anag

Goodness I was on 14 anagrelide plus 16 hydroxi a week but only for about a month I started to feel lightheaded so it was dropped to 10 Ang and 16 Hydroxi. It was only when all bloods were all good and I said but I feel so spaced out did we go down to 9 but 17 hydroxi. Swapping just one has made me almost normal. So for a whole year I’ve really struggled.

For you to cope with just anagrelide is really good. What’s inborn anaemia? I’m struggling with my heamoglobin I’m lucky if it’s above 10. I can only have 1 iron tablets a day because it shoots my ferritin levels up.

Anag profile image
Anag in reply to Wyebird

Hi Wyebird.

I just saw your post as I’m on vacation. We all react differently to the drugs we take. I know that HU causes problems with hematocrit and red blood count. I have Beta Thalassemia as do many Greeks and other Mediterraneans. (It happens to be a form of anemia that one is born with and happenstance be a protection against Malaria!) I was diagnosed with this 30 years ago in Montreal as a student. Until then, in the US, doctors were constantly giving me and my mother iron pills that gave us headaches and terrible constipation, because we weren’t missing iron! Looking back, It was terrible. If your ferritin is good, you don’t need iron pills.

My hematocrit is between 9,5 and 10,1. since I’ve been eating one little organic liver steak weekly, I finally got my red blood cells within the normal range. I bought the whole liver from the farmer and froze it in steaks so I could have a Steak a week for the next 30+ weeks. 🙂

By the way, I do think I found what is causing my burning skin, I believe I’m in menopause. Until last year, I was perfectly able to carry a child at 53. it seems this is a quick onset. I don’t have any other symptoms except lack of menses. I’ve heard so many Menopause horror stories from friends. If it’s just the skin, I’m one of the lucky ones.

All the best

Anag

Wyebird profile image
Wyebird in reply to Anag

I enjoyed reading your reply you are a wealth of information. I’m familiar with thalasselemia . It was once hinted that I too had that but then dismissed. I have a theory that magnesium is good for me. I’ve started to take tablets and a small amount of 90% coca chocolate. Lol I can only take the chocolate by dipping it in coffee. It also quells my sweet tooth. Last heamoglobin 2 weeks ago was 10 hoping its more when I get tested in 4 weeks time.

Mostew profile image
Mostew

Ps .. bone broth is excellent .

Mostew profile image
Mostew

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