I'm going to the rheumy and starting the process to change meds with my rheumy on Friday (we've been waiting for an eye issue to get dx before changing). I know my inflammation is out of control, I had a CRP of 27 a few weeks ago (first time it's been over 5.1).
In the meantime, I'm having a terrible time with my hands. They are incredibly painful, intermittently swollen, and unable to close more than halfway to a fist, even after applying heat and doing exercises. The only day I had some relief was Sunday, after 2 days of 10mg of prednisone. Then this morning I was back to useless hands.
I've tried cold, paraffin bath, compression gloves, and Voltaren gel. Nothing is helping this time. At times the pain is so severe the only thing I can do is take narcotics. I've never had to do that for any localized pain before (my PsA is, otherwise, active in most of my body, it's never usually so localized).
Does anyone have any other suggestions on what to do for the next couple of weeks? Prednisone and I don't mix for more than 2 days at a time, and 10mg is pretty much my limit. So a regular predi-step down pack isn't an option. I will see my doc on Friday, but he doesn't have a magic wand. So it's going to be awhile to see if the new med works, and my hand issue is not abating, it is getting worse.
I'm not used to having such intense hand problems, so I'm hoping to draw on some expertise here. I've been careful not to strain them, but still keep using them as I'm able. I find losing the use of my hands for fine motor so abruptly pretty terrifying, honestly.
I understand your prednisone stance, as I have a similar one. I hate to tell you what you already know, but it may be your best bet. If a low dose helped you, you could think about that as an option until you get your meds straightened out and working.
At topical, compounded pain cream might help a little, but it takes a while to get that through insurance and your rheum might not know how to even order it.
If the pain meds worked, keep on with it. It’s also not a great solution, but if it helps you survive the day then it’s worth a shot.
I am so sorry you are having a crappy time. I hope you wake up soon feeling better and wonder what happened!
Thanks for the input. The prednisone sucks because if I do 3 days in a row vs. 2, I get suicidally depressed, SUPER irritable, pretty much PMS x100. Ugh. I'm going to see if I can just keep carefully staggering my doses, leaving 1 to 2 days in between doses. I'm looking forward to what everyone else suggests too.
Taking pain meds for one area of my body just feels so weird. Usually when I'm in bad shape it is at least 12+ joints, not just severely in one area like now (every joint in my hands).
I take pain meds for a body part sometimes.like you, it’s not really typical for one thing to go kaput without dragging something else along for the ride. I will do it though, especially if I need to function.
How about a steroid shot. My rhumey did that fr me when I had hand issues. It was not in my hands but in the hip. He does not believe on single joint shots.
Sorry for your frustration, sounds like you are having a difficult time. Hands can be difficult to keep properly stretched. I avoid any twisting movents, they hurt the most for me.
I don’t think a steroid shot is an option (a last resort) because of the change in medication. Hows your psoriasis? My CRP really spikes when I have a flare. Not so much with PSA. I wish you the best of luck!
I'm far from an expert...however I know what worked for me during this past flare and ones previous. I'm currently taking MTX and Sulfa and they seem to do very little for inflammation. This past flare in my right buttock was rather intense so the second night I took a Tylenol 3 for pain. Day three I took a 200 mg Celebrex and with in a few hours I was feeling a change in the swelling, which relieved some of the pain. Day four again I took a 200 mg Celebrex and it again helped with the swelling. Today is day 5 and the swelling is almost completely gone. I told my doctor about this today and he seemed a little shocked that the Celebrex helped relieved the swelling and not the MTX and Sulfa.
This is the reason why I want to add Celebrex to my treatment, it works for my inflammation. In the past during bad flares I have taken 200mg morning and night.
In the past I've also had great success with cortisone injections. I've also had success with prednisone pills however it tends to take a few days longer. I've refused other pain medications like Demerol because I've tried to manage my disease with as little as possible knowing that I am young and have many years ahead of me. Marietta, I hope you find some relief soon!
Thanks! I can no longer take oral NSAID's, hence the Voltaren gel (it's a topical NSAID, prescription strength). Cortisone injections have helped me a lot in the past, usually when it is one specific area (a shoulder or knee). I don't think hands can be done that way through :(
Treatments are such a puzzle to deal with! We all have different things we do and don't tolerate.
I have had injections of cortisone and lidocaine in my finger joints. It was incredibly painful. I have had them in my hips, knees and spine without any pain and in my palm for trigger fingers which hurt but was fine. I have a high pain threshold and the ones in the finger/hand joints hurt like hell. I came out of the office with my hands curled in balls and couldn't move either hand for 48 hours (note to self- if I ever have it done again it will be one hand only) Then they worked without pain for about 6 weeks. I am not sure I would ever put myself (or my husband) through that again.
Sorry to hear Marietta. I've used Voltaren gel during flares in the past, in fact I never knew I couldn't use it with Celebrex until my doctor told me that the combination could cause internal bleeding. I bought a triple pack just recently at Costco as my husband has issues with his neck and shoulder.
I'm not sure about the injections as like you I have had them only in my shoulder and hips. It's worth asking, in fact I just looked it up and it says smaller joints in hands and feet may also see periodic cortisone injections. I wonder if they just use less in each joint?
I agree treatments are a puzzle, just as disease and the treatment varies for everyone. If my current mix isn't successful by the end of this month my doctor said it's time to look at biologic's. I told him I'm interested in trying Enbrel. He told me he has some patients on it and to be honest they are having success.
Marietta, I hope the inflammation goes down and you are able to find some relief. It's so hard to deal when the pain levels are bad. Sending healing thoughts your way and wishing you better days..
Marietta said:
Thanks! I can no longer take oral NSAID's, hence the Voltaren gel (it's a topical NSAID, prescription strength). Cortisone injections have helped me a lot in the past, usually when it is one specific area (a shoulder or knee). I don't think hands can be done that way through :(
Treatments are such a puzzle to deal with! We all have different things we do and don't tolerate.
Everyone has been so sweet to me during this discussion. I have tears in my eyes (could be the prednisone making me weepy! :) I'm so glad I have this group to ask for things like this. I've had PsA for 30+ years, and the only constant is that it is ALWAYS changing. I've always got some new scenario to deal with, like suddenly this hand thing.
It's been tough to not be able to do things like play board games with my two kids (we love playing games, especially in the winter), or currently, working on a jigsaw puzzle with my husband (every 5 years or so we go on a puzzle kick for a few months, we got a few out last week). The rest of me doesn't feel that terrible, so it's tough to sit here with hands that won't close.
I can type with open hands, and use the mouse, hold my phone to make calls, and that's about it. It's getting pretty boring in addition to the pain!
This group is wonderful Marietta! :-) I can relate to this disease and how it changes. My flares started in my late 20's and all of my 30's were very functioning other then having intense flares a few times a year in one area and aching hip and shoulder pain at night, I was able to accomplish a lot during that time. I really didn't think about my future until the last year. At one point I actually stopped seeing my rheumy for a long period and managed by only seeing my doctor. That was after a trial of Plaquenil and the side effects scared me, I stopped and managed on my own until it became unmanageable
Once I hit 40 I started having flares every month. This spring the flares increased to every few weeks and I started getting burning pain in my feet, hands, hips,back and shoulders daily. I had no idea about this disease or the treatment. Thankfully I found this site and read, connected with people and gained a greater understanding of this disease. I'm still learning about the medications, but have a better understanding now.
This really is an emotional roller coaster, the journey of finding the right treatment and the fear of the future. I'm keeping the faith. Having the support and understanding of others who can relate has been a huge help!
Marietta said:
Everyone has been so sweet to me during this discussion. I have tears in my eyes (could be the prednisone making me weepy! :) I'm so glad I have this group to ask for things like this. I've had PsA for 30+ years, and the only constant is that it is ALWAYS changing. I've always got some new scenario to deal with, like suddenly this hand thing.
It's been tough to not be able to do things like play board games with my two kids (we love playing games, especially in the winter), or currently, working on a jigsaw puzzle with my husband (every 5 years or so we go on a puzzle kick for a few months, we got a few out last week). The rest of me doesn't feel that terrible, so it's tough to sit here with hands that won't close.
I can type with open hands, and use the mouse, hold my phone to make calls, and that's about it. It's getting pretty boring in addition to the pain!
Marietta, Unfortunately I do not have any advice to give you, I have never experienced what you are going through with your hands. I get a lot of cramping in my finger joints which causes my hands to look disfigured until I can massage the cramp out of it. I have been off work this past 20 weeks due to illness and during that time I learned how to sign the alphabet, it has done wonders to keep my fingers limber and has reduced the amount of finger cramping. I understand your frustration and can appreciate how difficult things are for you right now. What I can offer you is my thoughts and prayers in hopes you will find what will work for you as soon as possible. Take Care
I feel your pain. The last 6 months had been like that for me. I coul barely move them most days. I honestly don't know how I got through it. It's a terrible feeling to not be able to do things. Only 2 weeks ago I started to get improvement and the swelling down with help of my new meds. I do don't do great on prednisone either...it keeps me awake at night.
I've used a product called Doctor's Pain Formula. I found it at the drug store and it contain willow bark which is like a natural aspirin. I used it at times when I had a lot of burning pain. From my experience it's better for the tendon issues than joints but it is said to be good for arthritis, joint pain, aches, sprains/strains ( I just listed what the bottle says ). Anyway it's in a cream form. For me cold actually makes things worse so I stick with heat.
So sorry you had to go through something similar Dini! It's a very odd experience for me.
I'm allergic to aspirin (salicylates, which are in most OTC creams). The topical Voltaren gel should be helping me, but I think my hands are such a mess they can't overcome what's going on.
My hands are often a problem. I use heat, compression gloves, wrist splint etc...I cant use many topicals due to itchy reactions. When its bad I soak in epsom salts and warm water, use most of the list above and take a pain pill. The pain med gives relief most of the time but I also have lidocaine patches that I cut to fit.
the patches make my nuckles numb but its better than the pain. Maybe your doc could call in a RX for them?
Ditto! Also, if taking oral steroids makes you whacky, avoid having an IM injection of steroids like the plague. Been there, crazied that.
michael in vermont said:
I have had injections of cortisone and lidocaine in my finger joints. It was incredibly painful. I have had them in my hips, knees and spine without any pain and in my palm for trigger fingers which hurt but was fine. I have a high pain threshold and the ones in the finger/hand joints hurt like hell. I came out of the office with my hands curled in balls and couldn’t move either hand for 48 hours (note to self- if I ever have it done again it will be one hand only) Then they worked without pain for about 6 weeks. I am not sure I would ever put myself (or my husband) through that again.
