neuropathy in feet?

[composition]

anyone dealing with neuropathy in the feet? On Prednisone and Leflunomide for a year, tapering Presnisone because of stress fractures [now on prolia].......this stuff is a constant battle, like whack a mole: one thing under control and another crops up. at least the PMR pain is well under control, and the rheumatologist said it is generally a two year journey at min. I think of all of you on this site often an pray you get comfort and help. I just don't post often....very busy running a local museum, and thankfully it keeps my mind occupied. At 77, I have a little "mind" left and lots of humor or I would scream. Any tips on neuropathy? Blood sugars so-so, and I see the endocrinologist next month as I keep tapering [ 7.5 one day, 10 one day till the end of the mo and then 7.5 to see what happens.]

[PMRpro Ambassador]

In your case the first place I would look as at the leflunomide. Neuropathy is a listed adverse effect.

One lady heavily involved in the charity in Scotland but not on the forums found leflunomide worked a minor miracle, she says she felt it "kick in" and, unlike with methotrexate, she was able to stop pred and felt better than for years. Unfortunately she developed neuropathy deemed to be due to the leflunomide,and she stopped it - the neuropathy did resolve. That also entailed a return to 15mg pred so she discussed using a lower dose of leflunomide and tried 10mg/day instead of 20mg. It helped but not enough and at the last I heard she is now on 15mg and as yet has no problems but it is working for the PMR. The dose appears to be critical, for her at least.

[composition in reply to PMRpro]

many thanks. I have multiple other health issues, and the rheumatologist said i am a very poor candidate for steroids and the methotrexate sp? definitely is out because of previous liver surgery. So we are down to Leflunomide. My hair is getting thin too. Surely I will eventually be off of everything? That is my goal in another year, so I'll try to hold on. This entire journey is a mine field. I appreciate your Health unlocked group, although I don't post very often. Thank you.

[PMRpro Ambassador in reply to composition]

I thought leflunomide isn't on either with liver problems - maybe the mechanism is different. It can cause severe liver damage though.

[Jackoh]

Hi I was on pred and lefludomide as I was finding it very difficult to taper from about 18 mg onwards ( I have GCAPMR) The beginning of last year I developed neuropathy in my right calf. I would also say that about 6 months previously I had developed neuropathy in my left foot, but this did not give me much pain. The neuropathy though in the calf of the right leg was excruciating and I was given Amitriptyline for the pain. After consulting my Rheumy Consultant ( Dr Hughes) it was agreed that I stop the 20mg of lefludomide as it was thought that this could be producing the peripheral neuropathy. I therefore stopped the beginning of 2019 after being on lefludomide,I think, for about 18 months.

I still have the peripheral neuropathy and am under a neurologist but certainly some of the swelling that I also used to see in my feet has gone.

I have also found that coming off the lefludomide has not made an significant difference to my tapering. It is still extremely hard to taper but I now found I am less likely to pick up every infection going( I constantly was picking up cold/ viral infections and UTI infections) This meant that my dose of steroids was often raised and so I never really got very far with my reductions. Reductions since coming off lefludomide have been very slow but relatively steady. At present I’m on 11 and a half - trying for the second time to reduce to 11mg.

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Let’s not bring up moles. I can’t believe how this hard crusty oh yuk things are growing everywhere. My dermatologist calls them my barnacles. I have found If I’d tell him it hurts zap that one is gone but alas too many...

As to prednisone I started in late 2015 and am now between 11 and 10. I will land on 10 for awhile. I have been on a yo yo ride bouncing from 10 to 20 then 30 then taper it back down ..... very weary about it all. But I do think

The GCA has taken a leave of absence which I am grateful for. I still have jaw pain that no one knows why. I know it is not GCA as I had been given 120 mgs IV and two day later 150 mgs prednisone IV. The pain didn’t budge.

I now have touch of sinus with upper respiratory....weirdest exhalations ever... I breath then exhale and the exhale has an echo and it seems to be louder and longer than the exhale wheeze. 5th and last day of antibiotics which is for the walking pneumonia....

Got up today needing some groceries and almost cried there was snow everywhere. Don’t get me wrong I love the snow but I won’t drive in it. Anyway the sun came out and I rushed to the store and am now back in my apt and yes.....go ahead and snow.....

My doctor said something I did not realize.... that prednisone will mask my pneumonia. Don’t have a clue about that.

As I sit here I have the strangest wheeze sounds like a kitty cat on my left shoulder.

What do stress fractures feel like? My second fall this season and the bone just below my hip hurts while lying down and walking. Doesn’t hurt when sitting in my cozy recliner.

Have a great day....