Flare since Nov? Feet!!!Need Help

[bluegirl7]

I have been around the bend on this. In Nov after lots of tension with husbands illness and coming back to US and my having to drive I had a flu vac on Nov 10. On Nov 13 pain so bad in rt ankle ended up in ER. Did MRI of foot and ankle. At first said Achilles Tendinitis but docs then said no not enuf evidence and pain in wrong place. Down side of rt foot and ankle and top of foot. Then left foot started. Have seen 5 docs and 2 PTs. My rheumatologist said flare and 2 docs said so from flu vac. He put me on 7.5 Pred. I had been down to 1mg gradually from 2018. But I have horrible twisted colon and odd type of digestion that they used to call spastic colon back when I was a child. Pred has made it worse. The constipation taking Linzess almost killed me and ended up bleeding etc and hospitalized. I also have damaged esophagus so take all kinds every day for that

So upping Pred for me means stomach pain and focus on it etc. So I tried staying on 7.5 for about a week but couldn’t. Then 5. But again stomach was awful. Trying 2 mg now but feet and ankles are worse. Now def both feet The last doc said peroneal nerve and gave a shot which just swelled up foot. I also have foot neuromas that are large from the days of high heels. They cause nerve pain in my toes which is very active suddenly as well Rheumie prescribed gabapentin which I will try. Anyone with experience of that for nerve pain?

all tests only show sine osteo arthritis I have bad osteoporosis. No RA no lupus etc.

lost my memory of flare to do. And how to manage Pred. This taking it at 2 am? Will it help more? Have uncoated in US? Wondering if I should try to keep doing the 2 mg and add 1 ? Hoping for lowest dose. And yes I do prunes and bran etc trying not to resort to Linzess which is another issue.

Thank you in advance of answers. I so appreciate the collected wisdom. I get so worried there is something deeper wrong with me that they haven’t found. We are moving back to France in 5,weeks for a year. I need to be able to walk!!!

Thank you all again

Blue girl with red burning feet and ankles!!!

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you are having so many probems.. not sure we have any simple solutions.

This contains usual advice for flare - but if Pred upsets you that much I would wonder whether it's worth it.. unfortunately only you know what you can endure -

healthunlocked.com/pmrgcauk...

You might find taking at 2am helps - but you won't know until you try.

Adding an extra 1mg may help - again you won't know until you try.

Have to say it does sound as if you have more going on, but as you are returning to France in 5 weeks, then doubt you'll get any answers from US doctors by then. So maybe you'll have to follow that up on your return.

Sorry no magic wand... 😊

[bluegirl7 in reply to DorsetLady]

thank you. I am going to start 5 mg today because 2 certainly isn’t helping and see how I do. I will be a red alert with stomach but I will try again to maintain the dose and see if it helps. Flare from flu shot!! The docs were pretty adamant about having seen several cases. Thanks again.

[PMRpro Ambassador]

I see peroneal tendinitis was suggested - but why give a steroid shot? A good old-fashioned small boot and some physio sorted mine. It took a while but there were no side effects!

This is the sort of thing I had - not a big moonboot thing

amazon.com/peroneal-tendoni...

[bluegirl7 in reply to PMRpro]

Hi. I have bought similar items but always the compression on top of foot caused great pain. I tried bigger one and they don’t hold it enough. Then also what shoes to put it in? When I put in sneakers the compression pain on top was unbearable. So I wrap feet and ankles with rock tape and doc said wear regular 1 to 1 1/2 heel booties that I buy I larger size. Big moon boot was untenable. I kept falling. I change shoes etc several times a day when needed also

[sidra1968]

Sorry about all your problems, it can be so overwhelming.

I take 1800 mg Gabapentin daily for nerve pain. I honestly don't know if it works for me, because I get epidural steroid injections in the cervical spine for the nerve pain, also. It works well on some, but not others. Pregabalin is another one they can try.

[Pixix]

I tried Pregabalin & gabapentin, but, sadly, after two weeks of effort, the side effects were too bad. But many people use these two drugs, not just for nerve pain! They are used for treating fibromyalgia, & help many patients.

[bluegirl7]

thank you. I understand from many people that you need to keep taking it to get relief and yes they have side effects. I get side effects from everything. I understand that dizziness is common and I still work PT and can’t tolerate that. I guess my biggest issue is not knowing what is wrong with me other than a flare but why in my ankles and feet. The latest theory is peroneal nerve issues but why? I am trying for 5 mg of Pred daily and see if I can handle that and see. I wish you well with your issues

[PMRpro Ambassador in reply to bluegirl7]

Peroneal nerve or tendon?

[bluegirl7 in reply to PMRpro]

Hi just saw this. The last doc - orthopedist said Peroneal nerve and he gave the shot on opposite side away from ankle bone as he said that is where the nerve goes. I have looked at exercises that involve stretching calf and are timidly trying that. Two physical therapists won't help because they think there might still be inflammation!! I do ice at night and hot bath in am and that seems helpful. I do take Tylenol (acetomenophen) if it is hurting and I have something stronger and also lidocaine pain patches. I see another foot/ankle guy on Wednesday. I mimic the boots for both feet with a certain regular boot with rock tape and/or stretch bandages. The other issue is the neuromas which are big and maybe the cause of the burning and redness and they are also in both feet. I stay hopeful I can sort this. Staying on 5 mg of Pred and trying to deal with stomach issues. Hoping I can maintain that. Higher is probably better but it was destroying my stomach and don't want to bleed and end up in ER again.

Thank you for everything!!