I've had PsA for about 25 years now. I'm in the middle of a severe flare-up. My PsA is spreading quickly, attacking new areas at a rate I've never seen. I have neuropathy in the last year or two but it has become severe, mainly hands and feet but also forearms. My Rheum. doesn't seem to know what to do about this. When I told him about the nerve pain he didn't think it was related to the PsA and told me to see a neurologist my area.
I can barely care for myself now. Have been off work for over 2 months and things are just getting worse. I live alone, family doesn't understand. The PsA is in my left hip, ankle and foot, left hand, arm chest and shoulder, right hand, wrist, arm, shoulder. Neck, head, even my jaw lt side. I get enthesitis in my ribs, chest and neck. It's also got into my right foot and seems to be spreading quickly.
I am overwhelmed by the severity of this flare and the symptoms. I have a hard time getting around and doing basic tasks. Typing this letter is a challenge. I'm at my wit's end with this and don't know what to do.
I should say that I'm just getting over sinusitis that was severe. Eustachian (ear) tube (lt) is still blocked most of the time. Treated with antibiotics, finished about 3 weeks ago (amoxycillin) but it still persists. My labs aren't great and my WBC went from 8.5 to 12.5 in about a month!
I am taking Alpha Lipoic Acid to help with the nerve pain. It's only been a few days but it has helped immensely. I am concerned about an interaction with MTX however so I didn't take it today.
I really don't know how to address this. I know there are many knowledgeable people here and am looking for suggestions on how to handle this before I totally loose it !
(P.S. MTX 2.5 mg x 9-10 once weekly, meloxicam 7.5mg x 2/day, folic acid 5mg/4 days per week.)
Hello, I'm sorry I am not one of those knowledgeable people but I'm very sure some with relevant experience and / or knowledge will be along soon. Meanwhile, the least I can do is to say I hear you, I hear your distress. Please hang on in there with us and lean on us all you like, I won't be the only person who's rooting for you.
I guess you need relatively immediate relief plus a longer term plan too. I'm wondering why you're not on a biologic .... might that be a possibility down the line? Also thinking that as Alpha Lipoic Acid helps then you need to clarify whether or not it is contraindicated with Mtx as soon as possible, might that be something you can do by phone tomorrow?
I do get sinusitis a lot, plus ear infections. Sinusitis is the pits, I know that much. Your GP surely needs to pull out all the stops to kick that into touch - more Monday action?
So sorry you're having a rough time. Are you taking a biologic? I didn't see it listed in your message? I understand how hard it is to deal with this disease alone - I'm single and live alone. Sometimes just the everyday things seem insurmountable.Is there anyone who can help out? Do you have a charity group in your area that can help once or twice a week perhaps with some basic needs, grocery shopping, taking the trash out etc.?
Please keep us posted on how you are doing and if you need anything.
Also, I have been having pain in both forearms and I'm concerned it's the PsA. Booking an app't with my doc before my regularly scheduled appointment.
I consulted with a pharmacist about the Alpha Lipoic Acid. He said that I shouldn't take ALA the day that I take my MTX. I'll call my Rheum tomorrow to confirm that information: that's a good idea and something I may not have done without your letter, so thanks.
I took a biologic (Simponi) about 5 years ago. I had a really bad flare and infections seem to have increased during and since then. I'm reluctant to try another, but I may have no other choice. My Rheum wants to add Sulfasalazine, which I've tolerated well in the past: I'm not sure that's a good idea with the neuropathy however.
I should mention that I also have Raynaud's. That may be a factor although I haven't looked into it.
This is my first bout of sinusitis and it's only affecting my left side (nose/ear), the same side as my Arthritis. My left eye gets very dry at times also. I hope that's just the sinusitis/allergy.
Thanks for your concern, much appreciated : )
Sybil said:
Hello, I'm sorry I am not one of those knowledgeable people but I'm very sure some with relevant experience and / or knowledge will be along soon. Meanwhile, the least I can do is to say I hear you, I hear your distress. Please hang on in there with us and lean on us all you like, I won't be the only person who's rooting for you.
I guess you need relatively immediate relief plus a longer term plan too. I'm wondering why you're not on a biologic .... might that be a possibility down the line? Also thinking that as Alpha Lipoic Acid helps then you need to clarify whether or not it is contraindicated with Mtx as soon as possible, might that be something you can do by phone tomorrow?
I do get sinusitis a lot, plus ear infections. Sinusitis is the pits, I know that much. Your GP surely needs to pull out all the stops to kick that into touch - more Monday action?
I hate the though of needing outside support inside the home, but that is something I'm going to look into. There is help available, I've just always managed on my own. Accepting the things I cannot change (at least for now) is the challenge.
I hope the forearm pain is mild and passes soon. I think you're wise to look into it.
Thanks for your understanding and support Frances : ) I will keep you posted. Frances said:
Hi JW,
So sorry you're having a rough time. Are you taking a biologic? I didn't see it listed in your message? I understand how hard it is to deal with this disease alone - I'm single and live alone. Sometimes just the everyday things seem insurmountable.Is there anyone who can help out? Do you have a charity group in your area that can help once or twice a week perhaps with some basic needs, grocery shopping, taking the trash out etc.?
Please keep us posted on how you are doing and if you need anything.
Also, I have been having pain in both forearms and I'm concerned it's the PsA. Booking an app't with my doc before my regularly scheduled appointment.
Me too JW, sinusitis mainly on my main 'PsA side', the left. But I realise you have a lot more than that going on at the moment.
For various reasons I've been wondering about neuropathy recently. So many people here have it, including me, though mine is minimal, quite bearable. I'm pretty sure that it is associated with PsA ... I mean, it's inflammation related isn't it? Yet I've heard here and elsewhere that rheumys sometimes scratch their heads over it. My impression is that the best rheumys consider the common 'add ons' as part and parcel of the disease.
I understand that your most pressing need is to manage and get through this present flare. But in time perhaps you and your rheumy will be able to agree a new strategy. Do keep us posted .... what you've described is really tough and if being here helps even a bit then that's worth it.
What are the symptom of neuropathy issues? My forearms have been hurting, aching for awhile - something I've never experienced before, The ache.
Sybil said:
Me too JW, sinusitis mainly on my main 'PsA side', the left. But I realise you have a lot more than that going on at the moment.
For various reasons I've been wondering about neuropathy recently. So many people here have it, including me, though mine is minimal, quite bearable. I'm pretty sure that it is associated with PsA ... I mean, it's inflammation related isn't it? Yet I've heard here and elsewhere that rheumys sometimes scratch their heads over it. My impression is that the best rheumys consider the common 'add ons' as part and parcel of the disease.
I understand that your most pressing need is to manage and get through this present flare. But in time perhaps you and your rheumy will be able to agree a new strategy. Do keep us posted .... what you've described is really tough and if being here helps even a bit then that's worth it.
I meant periodic help, when needed. My Mother gave me house cleaning for 6 months for my birthday and I've asked my cleaning woman to come to help me with stuff around the house on the weekend - sometimes. And I've already got the name and number of someone in case I get sick - with the flu or virus because it knocks me out and I can barely get out of bed sometimes. I plan to call her for help next time I get that sick . . . again.
JW said:
Hi Frances,
I hate the though of needing outside support inside the home, but that is something I'm going to look into. There is help available, I've just always managed on my own. Accepting the things I cannot change (at least for now) is the challenge.
I hope the forearm pain is mild and passes soon. I think you're wise to look into it.
Thanks for your understanding and support Frances : ) I will keep you posted. Frances said:
Hi JW,
So sorry you're having a rough time. Are you taking a biologic? I didn't see it listed in your message? I understand how hard it is to deal with this disease alone - I'm single and live alone. Sometimes just the everyday things seem insurmountable.Is there anyone who can help out? Do you have a charity group in your area that can help once or twice a week perhaps with some basic needs, grocery shopping, taking the trash out etc.?
Please keep us posted on how you are doing and if you need anything.
Also, I have been having pain in both forearms and I'm concerned it's the PsA. Booking an app't with my doc before my regularly scheduled appointment.
Frances, for me it involves intermittent numbness in extremities and sometimes repeating shock sensations. I assume that my cold, cold feet might be something to do with it too. I readily link it to PsA because it affects those of my joints that are clearly affected by PsA. But thinking about it a little more, it can have other causes so perhaps it is best to get it checked out.
If you go back to the 'All Discussions' page and search for neuropathy there are a whole load of discussions about it.
Frances said:
What are the symptom of neuropathy issues? My forearms have been hurting, aching for awhile - something I've never experienced before, The ache.
Sybil said:
Me too JW, sinusitis mainly on my main 'PsA side', the left. But I realise you have a lot more than that going on at the moment.
For various reasons I've been wondering about neuropathy recently. So many people here have it, including me, though mine is minimal, quite bearable. I'm pretty sure that it is associated with PsA ... I mean, it's inflammation related isn't it? Yet I've heard here and elsewhere that rheumys sometimes scratch their heads over it. My impression is that the best rheumys consider the common 'add ons' as part and parcel of the disease.
I understand that your most pressing need is to manage and get through this present flare. But in time perhaps you and your rheumy will be able to agree a new strategy. Do keep us posted .... what you've described is really tough and if being here helps even a bit then that's worth it.
Thanks Sybil. I'm making an app't with my rheumy to have both my forearms checked out.
Sybil said:
Frances, for me it involves intermittent numbness in extremities and sometimes repeating shock sensations. I assume that my cold, cold feet might be something to do with it too. I readily link it to PsA because it affects those of my joints that are clearly affected by PsA. But thinking about it a little more, it can have other causes so perhaps it is best to get it checked out.
If you go back to the 'All Discussions' page and search for neuropathy there are a whole load of discussions about it.
Frances said:
What are the symptom of neuropathy issues? My forearms have been hurting, aching for awhile - something I've never experienced before, The ache.
Sybil said:
Me too JW, sinusitis mainly on my main 'PsA side', the left. But I realise you have a lot more than that going on at the moment.
For various reasons I've been wondering about neuropathy recently. So many people here have it, including me, though mine is minimal, quite bearable. I'm pretty sure that it is associated with PsA ... I mean, it's inflammation related isn't it? Yet I've heard here and elsewhere that rheumys sometimes scratch their heads over it. My impression is that the best rheumys consider the common 'add ons' as part and parcel of the disease.
I understand that your most pressing need is to manage and get through this present flare. But in time perhaps you and your rheumy will be able to agree a new strategy. Do keep us posted .... what you've described is really tough and if being here helps even a bit then that's worth it.
I think it varies from the numbness and shock sensations, like Sybil said, to something like what I had in my feet, which was severe burning, prickling (as in like stepping on a hot bed of nails). Mine was so painful it nearly brought me to tears. It would also go up my legs about half-way to my knees. The feeling on my legs was like if someone was squeezing them and twisting. I used ice packs to relieve the burning in the bottoms of my feet and eventually my rheumy put me on Nortriptyline, which basically "cured" the neuropathy. However, my feet are damaged and I think the neuropathy either caused the damage or was a sign of it.
JW, I hope your doctors come up with a solution. Your pain is so widespread and I can only imagine how awful that would be. Maybe a biologic would bring your WBCs down==I'm not sure if that would be a good thing or not? Your number is on the high end of normal.
Frances said:
What are the symptom of neuropathy issues? My forearms have been hurting, aching for awhile - something I've never experienced before, The ache.
Sybil said:
Me too JW, sinusitis mainly on my main 'PsA side', the left. But I realise you have a lot more than that going on at the moment.
For various reasons I've been wondering about neuropathy recently. So many people here have it, including me, though mine is minimal, quite bearable. I'm pretty sure that it is associated with PsA ... I mean, it's inflammation related isn't it? Yet I've heard here and elsewhere that rheumys sometimes scratch their heads over it. My impression is that the best rheumys consider the common 'add ons' as part and parcel of the disease.
I understand that your most pressing need is to manage and get through this present flare. But in time perhaps you and your rheumy will be able to agree a new strategy. Do keep us posted .... what you've described is really tough and if being here helps even a bit then that's worth it.
Frances, I developed neuropathy, in particular, parathesia on the upper surface of both forearms as a side-effect of leflunomide. Since stopping the lef the itching and prickling has gone and I've regained probably about 80% of the feeling in the skin ... I only notice it's not quiet right if I scratch the skin. It's one of the less frequent s/e's of lef. Maybe worth checking all the leaflets on your meds?
Frances said:
Thanks Sybil. I'm making an app't with my rheumy to have both my forearms checked out.
I am on very similar medicine to you. I take methotrexate enbrel folic acid and meloxicam. I am also in a very bad flare and my doctor is saying I have some sort of nerve syndrome.He wants me to start an anti seizure medication but I am not sure yet. I also think I may have neuropathy in hands and feet. I am going to be seeing a neurologist soon. I hope you improve soon. I have been being treated for 11 weeks now still in the gap. Hope to feel better soon.
I'm sorry to hear that there are number of us dealing with these somewhat "rare" complications of PsA. I agree Sybil many Rheums don't seem to know this part of the disease. I just hope my Dr does some research or consults with colleagues on how to treat this. I know I'll be doing more research.
It's been a difficult day but I managed to get some things accomplished, including an appointment with my Rheum next Tuesday. I hope something can be done, pain medication if nothing else, not that I'm a fan. The Tramadol isn't doing the job, and I don't deal well with it's side effects.
The neurologist thinks it's the PsA or the MTX, but we're still in the middle of tests. The MRI's have been held up because I need to get this pain under control, with medication or otherwise. I've been hoping things would let up but no such luck, at least for now.
Speaking of pain, I'm going to have to cut this short, this right hand-wrist is really bad at the keyboard.
I appreciate all the suggestions and support. I will update and share anything I find out. I hope we all feel better soon
Very glad to hear you've got things moving so quickly. It would be interesting and also useful for many of us to hear what you learn from your tests but more importantly I hope you get the pain under better control very soon. Perhaps this horrible flare will turn out to have an upside if it leads to an even better approach to treating your PsA.
JW said:
I'm sorry to hear that there are number of us dealing with these somewhat "rare" complications of PsA. I agree Sybil many Rheums don't seem to know this part of the disease. I just hope my Dr does some research or consults with colleagues on how to treat this. I know I'll be doing more research.
It's been a difficult day but I managed to get some things accomplished, including an appointment with my Rheum next Tuesday. I hope something can be done, pain medication if nothing else, not that I'm a fan. The Tramadol isn't doing the job, and I don't deal well with it's side effects.
The neurologist thinks it's the PsA or the MTX, but we're still in the middle of tests. The MRI's have been held up because I need to get this pain under control, with medication or otherwise. I've been hoping things would let up but no such luck, at least for now.
Speaking of pain, I'm going to have to cut this short, this right hand-wrist is really bad at the keyboard.
I appreciate all the suggestions and support. I will update and share anything I find out. I hope we all feel better soon
JW, I'm sorry you're struggling with this. You're in Eastern Ontario, so I would highly recommend that you make the trek into Toronto to go to the Psoriatic Arthritis Centre at Toronto Western Hospital. I may have recommended it before. They work with your rheum, so it's unlikely that you would have to go more than twice a year. I've recently switched to the once a year monitoring.
When the going gets as tough as it is for you right now, you want the best brains that you can get to work on your case. Fortunately for us, some of the best PsA brains in the world are within easy striking distance of home. All you have to do is ask your GP or your rheum to refer.
Seenie, that sounds like an excellent idea. I read your link, and if I remember correctly, that is Dr. Gladman's team. I think My Rheum is in over his head re: my many symptoms, and a consult with these experts sounds like the wisest approach. I rememeber you talking about Dr. Gladman's team and that you hold them in high regard. I've done some reading and they certainly seem to be well respected, cutting-edge it seems. I may have a few questions for you about this, I hope you don't mind.
Thank-you Seenie, that's an excellent idea, and greatly appreciated.
You're welcome, JW. Yes, it is Drs. Gladman and Chandran, plus a team of residents and doctoral or post doctoral researchers. It is a crack team, whose names are referred to in all of the major pieces of PsA research out there. Their expertise turned the course of my disease right around.
Not to disparage the "regular" rheumatologists, but our disease is relatively rare which means that any one rheumatologist has limited experience, over a career, in dealing with it. I think a lot of them tend to see it as RA by another name and they do their "RA number" on it. But that doesn't always work. For people at the PsA clinic, it's all PsA all the time, and they have a sense of perspective, and intensive experience with it. The best thing for you to do is to give the secretary, Angela, a call: they are very very helpful, and they'll give you an idea of what kind of a timeline that you are looking at. It'll probably be quicker than getting into another rheumatologist for a second opinion.
You'll be glad you phoned them, I'm pretty sure of that.
That sounds great Seenie. My appointment's not until next Tuesday, so between the links you posted and a phone call, I'll be on top of things and ready when I do see my Dr.
It makes sense that Rheums would be up on RA and Osteo. but not so much on PsA . I've actually had similar thoughts considering the relative obscurity of this disease. I don't fault my Rheum, I'm just glad to know that with all this going on, I may be able to get specialized assessment and treatment(s).