Sore feet and stiffness

[VTAR24]

Does anyone suffer from stiffness and restless legs at nite time when I get up in the morning I do feel really stiff is this dwn to having CalR mutation as I am very active during the day or is it a side effect of interferon 90mg once every two weeks also my feet do be very sore does anyone else have this issue ?

[hunter5582]

You might want to check your magnesium and iron levels. Sometimes these symptoms can be caused by specific nutritional deficiencies. In my case the issue was magnesium deficiency.

[Anag]

hi there. I had a lot of pain in my hands and feet from the interferon Besremi and that hell went away after I stopped that treatment. it was working very well with the side effects were horrible. They started slow and then continue to become worse every time. I stopped the treatment over and over again allowing time for recovery but every time I started it was for about a month and then everything started all over again and worse than ever. Please keep an eye on that.

regarding restless legs one of the reasons that hardly any conventional Dr. will diagnose. That is parasites. it could be one cell organisms or bigger things. This goes especially for those with pets. Most people don’t feel it and most of us in the western world have parasites and don’t know it because anti-parasitic foods are not in our diet as they are in the rest of the world. For example, papaya seeds.

Since I started a parasitic cleanse twice a year with Mimosa Pudica Seed, my restless legs went away. 😃😃😃

You are also very active, so make sure you’re getting enough magnesium from a very good source!! Nothing from a supermarket or normal drugstore.

Mg deficits may also cause stiffness and cramps. I read and study about everything alternative and have a few good doctors that I seek out to double check and discuss my overall health. 😉

Hope to have helped. Anag

[Pogm in reply to Anag]

I am now wondering if my very painful toes and feet may be related to the use of Besremi. I did stop it for a month , but the pain did not subside, so I figured it was not Besremi. Perhaps I should stop for a longer period of time? I also take a low dose of Ruxolitinib which I started 4 months ago , but the pain was there before the Rux. I have been on Besremi for 13 months and the pain did not start until 8 months on drug. I take Tylenol but it comes back and I also don't want to rely on it for relief. Any ideas for relief? Thanks

[Anag in reply to Pogm]

My pain started at the 8 month point as soon as the Besremi kicked in and my thrombocytes plummeted. I was ecstatic! but the body got worse and worse. I became extremely sensitive to heat and the direct sun. I stopped several times. at the 1.5 year point when the sun would touch my skin, id get pain to the bone. I have now stopped since mid june 2024 and almost all pain has subsided except for my left foot. I was on 200mcg. restarted with 50mcg several times. It still worked but was at 550 instead of 250. now i am at 600 with only 2 anagrelide a day. I used to take 4-5 to keep at 750-800. so the work of besremi is still there. tomorrow is my next haemo appt. i hope you find solutions. quality of life is HUGE! I have that now. : )

[Smdg]

hi. I had ET with CALR before it advanced to myleofibrosis. I have since had a stem cell transplant. I suffered for years with restless legs. Before the SCT I was prescribed piridoxin which did help. I haven’t had the problem since the SCT. Make sure you are well hydrated too. Best wishes. Sue

[Loubprv Volunteer]

morning.

Interferon exacerbated my gluten sensitivity and I am now a full blown coeliac.

I too had loads of side effects from interferon which is a great drug if it works for you. It didn’t for me.

It could be the interferon that’s causing your restless legs and sore feet.

I m now on ruxolitinib which seems to be doing the trick and all side effects disappeared except unfortunately the coeliac.

Interferon is a drug that is known to exacerbate autoimmune conditions - of which RLS is NOT one. But, you never know.

All drugs can have side effects.

I’d talk it over with your haematologist - don’t wait. Louise

[VTAR24 in reply to Loubprv]

Tks for your advice do u know what other treatments are out ther as they told me interferon has the least side effects ?

[EPguy in reply to VTAR24]

to VTAR24

"They" are sort of right. IFN tends to a shorter list of sides and great benefits. But the worst case sides are severe and sometime permanent. As always we trade off something for another thing.

[KLCTJC]

I have plantar fasciitis which I have had for years. A reason why I quit running and went to biking. But I changed my shoes to ones that have great arch support. They are ugly but have changed my world. Now it doesn’t hurt when my feet hit the ground in the morning and I can work all day in them.

[mhos61]

I think it would be wise to be suspicious of interferon. You could request a blood test from your GP to look at inflammatory markers.

My husband has Rheumatoid disease; along with the many symptoms he encounters are early morning stiffness and restless leg syndrome. I note in another one of your posts you mention painful joints too. Looking at your posts it seems this has become more prevalent since you started treatment.

It’s a known fact that interferon may cause or aggravate autoimmune disorders. It’s actually mentioned on the Roche side effects label. This may not be the case for you, but a discussion around these concerns with your healthcare provider would be smart.

“Restless leg syndrome is a symptom of several autoimmune diseases, including rheumatoid arthritis, Sjogren's Syndrome, Crohn's disease, and inflammatory bowel diseases”.

autoimmuneregistry.org/rest....

[Loubprv Volunteer in reply to mhos61]

You’re absolutely correct. Wish I d known all that before I battled on with the blooming stuff - albeit the aggravation of immune disorders is quite rare.

[hsdale3]

VTAR,

I am on Interferon as well. Fortunately I am not suffering the restless leg and stiffness.

I take 500 mcg every two weeks so I am on a bit of a higher dosage. When I first started the INT (my first 2 injections) I had flu-like symptoms, but since then I have only experienced minor itching (mostly on my back) that isn't bad enough to attempt treating it (with anti-histamines).

I would look at the nutritional side of things to make sure restless leg isn't something basic (get a good magnesium supplement and stay hydrated for sure). If you rule that out, definitely talk to your care team about other treatment options. I was diagnosed last fall and put on HydroxyUrea. After 2 months I was unable to keep solid food down. I was switched to INT in Feb and the change has been a huge benefit for me. I am definitely a big believer in the INT, but everybody is different and what works for one person may, or may not, work for somebody else.

You mention your feet are sore. What is your uric acid level? High UA can/will cause gout which can be pretty painful (think the joints in your hands and feet). High UA is common with MPN's.

I hope you get relief soon.

Poppy

[Albt4z]

I have been experiencing severe leg pain at night and also discomfort in my forearms . I had a blood test to see if the calcium/vitamin D I've been taking (for Parkinsons) is too much for me. But the result came back that I have normal calcuim levels. So I'm wondering if the leg pain is something to do with my PV.