Rayos and Plaquenil and burning feet

[Linny3]

I was wondering if anyone is on rayos and or plaquenil and experiencing sore and burning feet? My feet are painful to walk on them and they burn almost all the time. I am not diabetic and the foot dr. can't find anything wrong. That just leaves medication as being the problem. I have been on both of them for about a month.

Thanks

Lin

[Mary63]

The symptoms of burning feet can be due to vitamin B 12 and/ or Vitamin B6 deficiency.

Either way it might be worth taking a B complex containing at least 80 mg B6. Deficiency in B6 is not something doctors test for, though they might have tested B12.

[Linny3 in reply to Mary63]

I take a b12 shot 5 days a week and have taken b complex for years.

thanks for the suggestion

[Observing1222 in reply to Mary63]

This is not correct information. Too much B6 causes neuropathy! Most multi vitamins and B-complexes have too much B6. You should have no more than 2 mgs B6 a day. All of which should come from food. U less you have been diagnosed with low B6. B6 stays in our bodies for weeks and high doses over long periods of time months can cause neuropathy! B12 is great! B6 Not good!

[HeronNS in reply to Observing1222]

This is an old thread. However this article is of healthline.com/nutrition/vi...

[Hindags]

I am on Rayos only. No burning feet. Twenty months on Rayos.

[Linny3 in reply to Hindags]

Thanks for letting me know

[Joaclp]

I see you mention Sjõgrens below. It can be associated with neuropathy, burning feet. They test for D3 deficiency besides B vitamins and diabetes and other. If it is very bad, you might pursue with a rheumatologist or neurologist. Long term use of some meds may cause neuropathy. Good luck!

[Ruadh]

Hi Linny3 - being curious as to unwanted / wanted side effects in drugs, I did a swift check on both plaquenil and rayos : drugs(dot)com Both drugs come up with 'erythema', lower legs and swelling of feet. So, possibly what you are experiencing is an unwanted drug reaction. Suggest reporting to your doctor. Hope problem clears up soon. Take care -

[PMRpro Ambassador]

Rayos/Lodotra is just a form of prednisone - and pred can cause peripheral neuropathy that can manifest as burning feet or hands. Some doctors claim that Plaquenil can act as a steroid sparer so you need less pred to get the same effect (there is no evidence of that beyond anecdotal reports) - the same applies to methotrexate. When I tried methotrexate I found that side effects that are normally associated with pred appeared - I'd never had them before and they went away when I stopped the methotrexate! So - if it makes pred work "better" it may also increase any side effects.

Then there is the erthema Ruadh mentions.

[Linny3 in reply to PMRpro]

Thanks for the thoughts. Interesting thought about the plaquenil . I have been off the plaquenil for almost 2 weeks with no change.

The rayos has a few different side effects then the reg pred. Thought I Would back off the rayos and continue with the regular for a week and see what happens. All very puzzling. I do have an appt. for a nerve test but not for another 4 weeks.

[PMRpro Ambassador in reply to Linny3]

There isn't much you can tell me about Lodotra, I've been on it for some 5 years. And before that had been on ordinary pred and methyl pred for the best part of 5 years between them. Side effects vary from person to person - and I can honestly say I have no identifiable effects from the Lodotra which is more than I can say for methyl pred. It was awful!

If there is nerve damage it may take some time to resolve. And PMR is something of a law unto itself.

[PMRCanada]

I did some investigation and Rayos/Lodotra is not offered as far as I can tell, in Canada. Darn!! I think it would benefit me as I currently take my reg pred dose between 4-6am which helps with morning stiffness. This delayed release version of pred would be easy to take before bedtime and take effect 4 hours later...perfect timing. It is the first medication I’ve read that is prescribed specifically for PMR (and RA), in the states.

Thought I might purchase it without prescription online if possible...$2747 for 30, 5mg tabs. Yikes.

Hoping it becomes available in Canada. So glad some of you lucky folks have access to this form of pred which provides you with options.

[Sofarbrnun in reply to PMRCanada]

My rheumy had recommended a small pharmacy that he used and called in a prescription

of rayos for me some 8 or 9

months ago. Not only did the pharmacy deliver it, the prescription was free! What a fluke! They told me the drug company does certain trials with people whose insurance doesn't cover the stuff. But yeah, $2500 plus for a month supply sounds about right, from what I've seen. I just got a note in the mail though, saying I'll no longer be able to get it free of charge after the first of the year. You might want to check with your doc and see if he knows about any trials. Otherwise, I understand it's possible to order delayed release capsules that you can put your regular pred in and take it at night and have it working by morning. Worth a look see. Bon chance.

[PMRpro Ambassador in reply to Sofarbrnun]

There are no delayed release capsules that work the same as Rayos. You can get gastro-resistant capsules but that is a different thing altogether - it may work for some people but not others.