[Clareb]

Hi, I am a 47 yr old mum with long standing Lupus/UCTD - mostly mild. In the last 2 years, I have been experiencing burning on the inside of my arms. This is worse during flares but constant generally. Aggravated by swallowing bulky foods & yawning for some reason. Lately I have been experiencing a feeling of ice cold water on the back of my thigh which is becoming more significant (no flare currently) I also have a weak diaphragm - cause unknown. My B12 is on the low side of normal and my WBC is always quite low but all other tests are normal including SFEMG & NCS done in April 2014. The latter was done to exclude MG as I fatigue/weaken quickly. My hips have become chronically sore and this is worsened with exercise, not sure if this is related to anything. If it is neuropathy, do I need to flag it up or just wait and see? I take Prednisolone 10mg/day & Mycophenolate 1.5g/day. I am keen to avoid more Dr's attention but also don't want to ignore something that needs to be resolved.

I would be grateful for anyone's thoughts. Many thanks. Clare

[mrsD]

Could be PN. Cold feelings...typically involve the nerves.

But your medications too, are problematic.

Steroids, will deplete magnesium and potassium and this leads to weakness, and fatigue.

This is a listing of reported side effects from Cellcept:
http://www.drugcite.com/?q=cellcept
You can click on any field to open it for further details.

You should get that B12 reevaluated and supplement ASAP and also get your Vit D checked.

Try using the magnesium lotion that many of us use here...
Morton Epsom lotion. Or at least soak in a bathtub with lukewarm water and epsom salts, if the Morton's is not available where you live. The magnesium will go thru the skin and help that way.

[deb b]

Originally Posted by Clareb

Hi, I am a 47 yr old mum with long standing Lupus/UCTD - mostly mild. In the last 2 years, I have been experiencing burning on the inside of my arms. This is worse during flares but constant generally. Aggravated by swallowing bulky foods & yawning for some reason. Lately I have been experiencing a feeling of ice cold water on the back of my thigh which is becoming more significant (no flare currently) I also have a weak diaphragm - cause unknown. My B12 is on the low side of normal and my WBC is always quite low but all other tests are normal including SFEMG & NCS done in April 2014. The latter was done to exclude MG as I fatigue/weaken quickly. My hips have become chronically sore and this is worsened with exercise, not sure if this is related to anything. If it is neuropathy, do I need to flag it up or just wait and see? I take Prednisolone 10mg/day & Mycophenolate 1.5g/day. I am keen to avoid more Dr's attention but also don't want to ignore something that needs to be resolved.

I would be grateful for anyone's thoughts. Many thanks. Clare

Hi Clareb, I have PN and relate to the cold feelings. Sounds like you have a number of challenges and it might be time to revisit with your Doc and do a comprehensive check up. Don't ignore things for too long! Please let us know how things turn out! Ps....I love how you state "I am keen to avoid more Dr's attention"......well said! Where are you from? Deb

[Clareb]

Originally Posted by deb b

Hi Clareb, I have PN and relate to the cold feelings. Sounds like you have a number of challenges and it might be time to revisit with your Doc and do a comprehensive check up. Don't ignore things for too long! Please let us know how things turn out! Ps....I love how you state "I am keen to avoid more Dr's attention"......well said! Where are you from? Deb

My thanks to you and mrsD. Is your PN progressive and have you identified a cause? How were you diagnosed? I live in the UK. We're so lucky to have the NHS - my care & countless expensive drugs have cost just £104/yr. The downside is the huge budgetary constraints and lack of control that we have over our care. Private medicine is quite small scale here and facilities limited.

The suggestion of my drugs being the cause is very plausible. Consultants are very reluctant however to entertain these thoughts - I had many lesser documented side effects from Methotrexate, Stemetil, iron infusions and even Penicillin! Lupus people are ridiculously intolerant of drugs.

Thank you once again. Clare

[mrsD]

Yes, there is a sub category of lupus called drug induced lupus.
I have had 2 reactions in 30 yrs to drugs...both blood pressure drugs. Hydralazine and Lisinopril.

ANA are typically not elevated in drug induce lupus. The lupus website has an explanation about this specific type of lupus too, which may be helpful for some readers here.

[deb b]

Originally Posted by Clareb

My thanks to you and mrsD. Is your PN progressive and have you identified a cause? How were you diagnosed? I live in the UK. We're so lucky to have the NHS - my care & countless expensive drugs have cost just £104/yr. The downside is the huge budgetary constraints and lack of control that we have over our care. Private medicine is quite small scale here and facilities limited.

The suggestion of my drugs being the cause is very plausible. Consultants are very reluctant however to entertain these thoughts - I had many lesser documented side effects from Methotrexate, Stemetil, iron infusions and even Penicillin! Lupus people are ridiculously intolerant of drugs.

Thank you once again. Clare

Hi,

My official diagnosis is small nerve fiber polyneuropathy, SFN, PN are easier to write! My Neurologist suspected it the first time I saw her in consultation regarding my complex regional pain syndrome (CRPS). SFN was confirmed by sweat test failure and skin biopsy. It is progressive for me. What started in my feet has moved up to my knees and my hands to elbows are also involved. I also have Erythromelalgia and CRPS in my feet and hands so sometimes it's very difficult to know which condition is causing the pain. Until recently, no underlying cause for the SFN had been
found despite many blood tests. A week ago I was diagnosed with Sjogren's Syndrome, which may be the cause of the neuropathy but may be secondary to it. More work to be done to sort it all out! Although our healthcare systems are different, I sometimes feel that I have no control over my care as well! I'm fortunate that I have seen medical professionals who understand these conditions but that is not the case for everyone. I don't know if you would agree but here I think we suffer because in many cases, no one provider advocates on our behalf and facilitates getting us the right specialty care at the right time. We are left to figure all this out on our own, all the while trying to manage unbearable pain and other symptoms. Sorry I digress but other healthcare systems are fascinating!

I hope you are able to get things sorted out soon Clare!
Deb