So, since I've been having to take Hydrea, or Pegasus, and now Jakafi, those drugs or something is really affecting my feet. I have developed neuropathy, but also it is like my feet belong to 2 different people. One peels on the bottom no matter how much lotion I put on it, and the nails on that foot are turning colors. The other one burns up around my ankle, swells, and now it feels like I turned my ankle WHILE I WAS IN BED. What experience does anyone have like this, and what are your suggestions for improvement? I have been to 2 dermatologists, with no real help. I've asked my Hematologist for a referral to a dermatologist that has experience with cancer patients, but haven't seen him yet. Any help would be appreciated!
ET and Feet: So, since I've been having to take... - MPN Voice
ET and Feet
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dogsandhorses
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Forgot to say that I am 74, with ET JAK2 positive, and started Jakafi about 4 months ago, with dosage going from 15 mg. twice a day, to 10 mg. twice a day. Platelets dropped down to 227 on the higher dose, but to try to improve my side effects, Dr. reduced the dose. I've had other health problems in the last 2 months, and now my platelets are at 522. Red cells growing as well. My feet really worry me.
Sorry for it. I tried Scenar sessions (phisiotherapy) and Bemer, firtly, because we have some problems with our microcirculation. Massage with oil organic wild lavanda (1700 m) or CBD with higher chemistry, and It goes good for me. Exercise and good antiinflamatory diet with taking care of the microbiote, are the keys. Good luck!
This seems to be vascular/circulatory, but the cause is what I need to find out.
Hi have they checked your vitamin levels like b12 l, folate, iron, vitamin D etc ? If not I would ask them to check all your levels to make sure it’s not one of those.
When I started treatment I developed functional b12 deficiency which caused nerve damage in my legs and feet etc but it caused a lot of weird Symptoms . I believe I had it all the time but hydroxy exacerbated the symptoms and nerve problems. I now have to take monthly b12 injections for life . Make sure they check all your vitamins first to rule that out.
Otherwise as someone said make sure you eat an anti inflammatory diet if you aren’t already and try light exercise etc even walking if you are able to . This has made a massive improvement to all my symptoms and really helped resolve alot of my MPN symptoms even on treatment.
It's been awhile since they checked all my vitamin levels. Just checked my thyroid and liver functions, and they were normal.
Did you check B12 in blood test? Thanks
Yes mine actually came back normal but the lower range - my neurologist I was under sent away MMA test for b12 and showed my tissues/organs were significantly depleated in b12 and I was diagnosed with functional b12 deficiency . Apparently in MPN your b12 can appear normal with a deficiency
What tissues and organs are affected with lack of B12? Thanks
Kidneys liver,heart
Yes, it was low. Haven't seen the Dr. since the last blood test.
I had problems with my feet the first time I was on hydroxy, it cleared up when I went on a different drug. Current back on it but feet ok - so far.
My foot problem only started after I went on Peg, and now Rux. I had really bad gastro problems in Hydroxy. Had to do something else.
My Hydroxy problems were gastrointestinal. Bad, so I had to move away from it.
did you have any of these symptoms before starting medication? If not, then maybe it might be helpful to ( with your Drs permission) stop taking your meds and see if the symptoms go away.
Definitely get all your vits checked out as suggested below. Gets copies of results with ref ranges. Even being low in range can be a problem, not necessarily optimal for good health.
No, I never had any of these things before.
Kind of suggests your symptoms are related to you meds then. Need to discuss that with your Dr. and decide together what is best for you.
I really feel for you as I too have problems with my feet. They're not the same problems but my feet feel spongy as if I'm treading water, they also feel like they're burning a lot of the time. (Anybody else have this?)
I started hydroxy last May but I think my peripheral neuropathy problems started before that and very possibly there were due to a Vit B12 deficiency.
I've started on B12 injections which have hugely helped many other symptoms but, as yet, not the feet...but I live in hope. Vitamin B12 is a huge topic and one which I definitely recommend you look into. GPs and haematologists don't appear to be making the link between a B12 deficiency and MPNs. It's also worth saying that even if your blood test for B12 appears in the 'normal' range, this is not necessarily accurate.
A post by MPNpatient123 has already mentioned 'Functional B12 deficiency' and this is where you experience deficiency symptoms despite having normal B12 blood levels. It seems that it is due to the body's inability to utilise the vitamin which can lead to neurological problems.
There is an excellent website called TheB12Society which is very informative, also if you really want to delve deeper I recommend a book called Could it be B12? by Sally Pachelok.
It's definitely worth pursuing. I had my first B12 injection last October and it changed my life. OK, I still have E.T. and spongy feet but I feel that I am getting somewhere.
Good to know. I asked my primary care about B12 injections, and she said they weren't allowed to give those injections anymore. My prior primary care Dr. did give those. But that was several years ago. I'll ask the Hematologist, and the new Dermatologist.
It's very curious. People seem to have such different experiences with their GPs and Haematologists regarding B12. My GP accepted that my level was normal but low and he admitted that many of my symptoms could be linked to a deficiency and just gave me a jab!! I've now had three and can have them every three months. More importantly, I've just been to seen an MPN specialist at The Christie and he has no qualms about me continuing the injections along with my other medications including hydroxy.
I do hope you are able to push this and get the much needed advice and treatment that you obviously need. Keep us posted and best of luck.
This is an issue that needs a proper diagnosis and intervention. If the symptoms did not start until after you started on the cytoreductive medications, it would be natural to first suspect a medication adverse effect. If the symptoms have persisted across three different classes of medication, that suggests it may be something else. Note that it could also be a combination of causes that may or may not be related to the MPN and the medications.
You did not note whether the dermatologists cultured the peeling skin to check for an infectious agent. That would be important to know. As others suggested checking for a nutritional deficiency, particularly the Vit B complex, would be a good idea. There are other conditions that make the list to rule out. Note that this is not to say that any of these are involved, just that they make the list of "could be" - Diabetes Mellitus, Hypothyroidism, Erythromelalgia (can be MPN-related), autoimmune conditions (e.g., Lupus, Sjögren’s syndrome). There are other more rare possibilities, but it makes sense to start with the more likely suspects. It remains possible, even if unlikely, that you are very sensitive to all three classes of cytoreductive medication. It is also possible that drug-drug interactions could be involved if you are on multiple medications.
As you can see from the list of possible causes, it may be something outside of the scope of a dermatologist. One would expect that the dermatologist would know what other doctors to refer you to if they cannot find the answer. The hematologist should also be able to refer you to the specialists you need to sort this out.
This is not a time to tough it out. You need a clear answer and proper intervention to deal with this issue. It will be important to advocate for yourself and push to find out what is going on.
Please let us know what you learn and how you get on. All the best until then.
Thank you, Hunter. I've just been tested for liver and thyroid function, and both were OK. I'm not sure about any testing for Diabetes or Erythromelalgia. I'll ask about those. I did see that my B12 was low. The Hematologist took me off of B12 and Biotin when I started with him. He was concerned about interactions of those with the MPN drugs. Sounds like it is time to revisit those, and other vitamin levels. I haven't been able to eat a very consistent diet due to gastrointestinal issues for the past 7 years, so it could be somewhat diet related. I usually eat a Mediterranean diet, when I can eat.
Neither of the Dermatologists tested the peeling skin. One said it was Athlete's foot, but the treatment did nothing to help it, and just one foot doesn't make a lot of sense. I've been mostly trying to tough it out, but really do need some help.
I would try aspirin 325mg. If it’s erythromelalgia, that should help. Pegasys can cause this. Not sure about the other meds.
Thanks for the response, and suggestion.
Hi I also have had major problems with my feet and toe nails. I have Et Jak 2 . Itching irritated feeling that I was my skin was tight , peeling skin vertical splitting nails which were difficult to to cut as they seemed to bend .
When I was started on Hydroxycarbamide I was also put on allopurinol for a month which helped the burning sensation and skin peeling .
But eventually I took nail clippings to Gp and anti fungal systemic treatment for 8 months was started .
Bingo it helped , my nails have almost completely grown out normal and skin peeling stopped. Occasionally skin feels tight again but nothing compared to what I went through for years .
So persevere . It is debilitating with no respite . I used to soak my feet in warm water with bicarbonate of soda which calmed them .. and should have any side effects so worth a try .
Good luck L
Wow, nail clippings to GP. I will see if I can do that, and meanwhile the soda is certainly worth a try. Are you still taking Hydroxyurea, or some other drug for the ET? Thank you!
morning yes still taking Hydroxycarbamide it was horrible to start with made me feel awful but no alternative was offered . I have persuaded them to reduce dose twice and platelets maintain at 400 so far they agreed . Fatigue is rotten but I am slightly reluctant to change medication even if it was on offer , this devil I know now … so for the moment I carry on .
Do you have any skin changes around ankles I do especially on right leg ?
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