Oh God...I am having such horrible week. I am kind of used to the spine pain (as used to it as one can get with this horrid disease!), but my hands and ankles are getting sooo bad it is hard to do anything! I am so frustrated! I get that we have to give these medications time to work as I have been on Sulfasalazine since january 20, but I don't think I should be getting WORSE on it!!. My hands are getting so much worse! I originally had one swollen joints, (fairly mild) on one hands ring finger, and my left hand pointer finger was deformed from the arthritis (pointing downward and inward....I think she called this Mutilans????).....Now the two joints are HUGELY swollen and the first joints one most of my fingers on both hands have now started to "bump up" and are incredibly sore and I almost cannot bend them!!! This was how the original deformity on the left pointer finger started. I am so scared that my fingers are all going to be deformed!
I am having a hard time holding on to things, typing is painful, doing my hair/makeup is painful, cooking is painful,,,,,everything you do with your hands is painful!!! Even petting my dogs is painful!!!
Another new pain that has developed while on the Sulfa is the backs of my heels at the achilles tendon (where your heel joins your ankle)...some times I can barely walk this joint hurts soo much!!!! I honestly don't know what to do....I have pretty good pain drugs but they are not working for this type of pain, and I cannot take the anti-inflammatories due to stomach ulcers....I tried to get into my Rheumy and was told she was booked until April 23!!!!
OHHHH!!!!!! I know there is no magic answer but feeling so frustrated that I am getting worse while on a drug that is supposed to be helping. Anyone else have any suggestions to help excruciating finger and hand pain?????
Thanks for letting me vent!!! Even that helps a bit.....my dogs let me vent to them, but don't have much to say in return!! ha ha
I have the Achilles tendon thing myself and it is hugely painful. With you on the swollens hands too -! Mine were bad last year and it’s just awful. If you can’t get to see your rheumatologist then can’t you see your gp? They might give you something short term to help (steroids?).
Hey Dani, even though I'm feeling better on Sulfasazline my fingers are still sore and swelling up bad. Yesterday the swelling was so bad that I could feel it throbing.
I thought I read that it usually takes 6-8 weeks to start noticing any difference. I've been on it since Feb 2nd and in my 6th week. You're not much more ahead of me.
Dani, so sorry you are suffering. I hope you find some relief. If nothing else, I hope it helps to get it off your chest in this forum. Good luck and I'll keep you in my prayers.
I feel so sorry for you, I have no advise for you because i am new to all this. but I understand your pain. I really hope things get better for you soon. blessed be:)
This happenned to me when I was given Sulfasalazine. Within 3 months I got considerably worse - its almost like it sped up the disease, even my Rheumy agreed that I was much worse and tok me off straight away. I have been on Humira, Enbrel and Simponi with no luck, the only thing that got my inflammation down was methotrexate and I resisted it for years but am now glad I am on it. Nothing helps the pain but :-(
Hi. My hands get pretty bad, the swelling up like sausages and pain. My OT
ordered me custom compression gloves to try. At first I thought 'are you nuts!'
they already are killing me and you want me to try to squish them in compression gloves!
But, she was right to try. I find they do help me with hand pain, once I get them on.
They ventilate well and for me they help bring down the pain
not completely but in combination with meds and in
splints etc. they help. Might be worth seeing if they would help you.
There are some over the counter arthritis gloves, they are not the same
as mine as they are custom but, they might give you an idea if they would
help with the pain before you invest in custom gloves. I am glad I have mine and
they come in doddery colours. I figure if I need canes and splints and gloves
then they better make me feel happy and be funky. Anyway long post,
but maybe gloves might help. Hang in there. I keep telling myself this too shall pass.
Not easy to have this disease.
This might be a good idea...I think i will look into it. Thanks. Kirsten!
Kirsten said:
Hi. My hands get pretty bad, the swelling up like sausages and pain. My OT ordered me custom compression gloves to try. At first I thought 'are you nuts!' they already are killing me and you want me to try to squish them in compression gloves! But, she was right to try. I find they do help me with hand pain, once I get them on. They ventilate well and for me they help bring down the pain not completely but in combination with meds and in splints etc. they help. Might be worth seeing if they would help you. There are some over the counter arthritis gloves, they are not the same as mine as they are custom but, they might give you an idea if they would help with the pain before you invest in custom gloves. I am glad I have mine and they come in doddery colours. I figure if I need canes and splints and gloves then they better make me feel happy and be funky. Anyway long post, but maybe gloves might help. Hang in there. I keep telling myself this too shall pass. Not easy to have this disease.
Oh dear Dani sorry you having such a terrible time. Is there not perhaps something you can rub on your hands like a cold cream or something? Its awful that one has to be so careful with the meds, I too suffer with my stomach. Hope you feel better soon, hang in there
Thanks....that is a good idea, I think I will try and call there tomorrow. Thank you so much....I appreciate the advice
trees said:
Dani perhaps you can call back and say it is an emergency? Or see your GP and get him to call the rheum (while you are there in the office if at all possible) I know I can call my rheum nurse and get what they call a side by side appt and I see the nurse she decides what the course of acton will be and the rheum sees you for about 5 minutes to ok or nay it. worth a call if you can. I am so sorry you are suffering so much. Vent away. I can highly reccommend a kenalog shot. I just had one and it has eased my back pain tremendously. I can't believe how much pain I was in and am still in. I am still taking narcotics to keep in right under control for now. it will get better.
I just bought some compression gloves myself. The ones I got are called Tommie Copper. Check out there website for free shipping too right now at www.tommiecopper.tv
My husband got a pair for his aching knees and got the ones for my hands. I am going to trade them in though, as I got the half finger gloves instead of the full finger gloves I should have gotten. I find they do help a bit especially when I wear them to bed all night (that is the worst time for me.)
Good luck!
Lainee B.
dani7865 said:
This might be a good idea...I think i will look into it. Thanks. Kirsten!
Kirsten said:
Hi. My hands get pretty bad, the swelling up like sausages and pain. My OT ordered me custom compression gloves to try. At first I thought 'are you nuts!' they already are killing me and you want me to try to squish them in compression gloves! But, she was right to try. I find they do help me with hand pain, once I get them on. They ventilate well and for me they help bring down the pain not completely but in combination with meds and in splints etc. they help. Might be worth seeing if they would help you. There are some over the counter arthritis gloves, they are not the same as mine as they are custom but, they might give you an idea if they would help with the pain before you invest in custom gloves. I am glad I have mine and they come in doddery colours. I figure if I need canes and splints and gloves then they better make me feel happy and be funky. Anyway long post, but maybe gloves might help. Hang in there. I keep telling myself this too shall pass. Not easy to have this disease.
My hands were just like that until I started Humira... within days the swelling was minimal and the pain was almost non-existant... The swelling is still there (ugly finger syndrome) but it is not anywhere near as bad... Are you on biologics yet???
No, unfortunatley. I did see my Rheumatologist yesterday for my three month follow up, and told her that the sulfasalazine was not working, so we are going of that and starting on Methotrexate, 20 mg 1x per week for 3 months, if I get minimal or no benefit from that she has agreed to add in a biologic, either humira or enbrel...said she is okay with either one. I don't really know why we can't just go to the biologic now as I have private insurance that will pay for it, but she said it is the "protocol" to try 2 DMARD's first then move to the biologics...i get that in cases where you are using government insurance in Canada (ie. blue cross it is a requirement), but I have private insurance that will pay and it is not an issue. Anyway, she was adamant that we must go this route first, so I guess MTX it is starting this Saturday. Maybe it will help. Sulfasalazine certainly did not.
Dani, I do hope the mtx works for you, and I hope your side effects are few. (My rheumy tells me that most people tolerate it pretty well, so fingers crossed.)
I'm interested in what your rheumy described as the "protocol". I'm in Ontario. MTX has done nothing for me, and, like you, my private insurance would cover a biologic. But my rheumy wanted to try sulfasalazine and plaquenil as well. So that's where we're at. I'm not getting better, though. I see my rheumy in a couple of weeks, and it'll be interesting to see whether I'll finally get a biologic.
Good luck with this, and hope your pain diminishes.
Sulfasalazine seemed to make me worse too. Odd isn't it? I have started on MTX (and a nice course of steroids) that seem to have made everything better so far...
Interesting that your doctor had you do the same before moving on to biologics. I thought it was odd, even though I have two private insurance plans, both of which said nothing about having to try dmards before being on either Humira or Enbrel, they just said they would pay 60% and 85% respectively so I will be fully covered...buy my doctor INSISTED that we try the MTX before moving on....I don't get it, but it must be a "standard of care" or something. I am hoping that I tolerate the MTX okay as well and that it does something but she did tell me that it will take 4 - 6 weeks before I notice any improvement....not happy about that!!! I hope you have some better luck with treating yours!!!
Seenie said:
Dani, I do hope the mtx works for you, and I hope your side effects are few. (My rheumy tells me that most people tolerate it pretty well, so fingers crossed.)
I'm interested in what your rheumy described as the "protocol". I'm in Ontario. MTX has done nothing for me, and, like you, my private insurance would cover a biologic. But my rheumy wanted to try sulfasalazine and plaquenil as well. So that's where we're at. I'm not getting better, though. I see my rheumy in a couple of weeks, and it'll be interesting to see whether I'll finally get a biologic.
Good luck with this, and hope your pain diminishes.
Yes, it's interesting, isn't it? What I'm reading is that they often leave you on MTX even when you move on to a biologic. I sure hope not - I hate MTX. Have I mentioned that before? LOL
My drug plan covers me for 90% and there were no "try the other stuff first" rules when I checked. But yes, it must be standard procedure.
Your rheumy says 4-6 weeks. Let's hope. Other things I've read say 3-4 months. I've been eight on mtx, four of those combined with sufasalazine and plaquenil. Still no relief. I sure hope my rheumy has some good ideas when I go go see her in May.
Be sure to let us know what's working for you!
Seenie
dani7865 said:
Hi Seenie...
Interesting that your doctor had you do the same before moving on to biologics. I thought it was odd, even though I have two private insurance plans, both of which said nothing about having to try dmards before being on either Humira or Enbrel, they just said they would pay 60% and 85% respectively so I will be fully covered...buy my doctor INSISTED that we try the MTX before moving on....I don't get it, but it must be a "standard of care" or something. I am hoping that I tolerate the MTX okay as well and that it does something but she did tell me that it will take 4 - 6 weeks before I notice any improvement....not happy about that!!! I hope you have some better luck with treating yours!!!
Seenie said:
Dani, I do hope the mtx works for you, and I hope your side effects are few. (My rheumy tells me that most people tolerate it pretty well, so fingers crossed.)
I'm interested in what your rheumy described as the "protocol". I'm in Ontario. MTX has done nothing for me, and, like you, my private insurance would cover a biologic. But my rheumy wanted to try sulfasalazine and plaquenil as well. So that's where we're at. I'm not getting better, though. I see my rheumy in a couple of weeks, and it'll be interesting to see whether I'll finally get a biologic.
Good luck with this, and hope your pain diminishes.
There is a protocol most, physicians groups adhere to it for liability reasons (percieved or real I don't know) What an insurance company says they will pay for and what they approve are two different things. Somewhere in your contract (not policy) you will find a funny clause that allows them to not pay if they haven't pre approved or pay at a lower rate based on their schedule meaning simply they if they decide that you should try their approved drug first they won't supply out of their pharmacy (all health insurance companies in this country are contracted with or own one. So basically they will pay the percentage based on what they think is the cost. With biologics being as much as 20 grand a year even if the pay 80% but you don't get it from them, they could bas the 80% on a 10 gand cost costing you 12 grand out of pocket.
dani7865 said:
Hi Seenie...
Interesting that your doctor had you do the same before moving on to biologics. I thought it was odd, even though I have two private insurance plans, both of which said nothing about having to try dmards before being on either Humira or Enbrel, they just said they would pay 60% and 85% respectively so I will be fully covered...buy my doctor INSISTED that we try the MTX before moving on....I don't get it, but it must be a "standard of care" or something. I am hoping that I tolerate the MTX okay as well and that it does something but she did tell me that it will take 4 - 6 weeks before I notice any improvement....not happy about that!!! I hope you have some better luck with treating yours!!!
Seenie said:
Dani, I do hope the mtx works for you, and I hope your side effects are few. (My rheumy tells me that most people tolerate it pretty well, so fingers crossed.)
I'm interested in what your rheumy described as the "protocol". I'm in Ontario. MTX has done nothing for me, and, like you, my private insurance would cover a biologic. But my rheumy wanted to try sulfasalazine and plaquenil as well. So that's where we're at. I'm not getting better, though. I see my rheumy in a couple of weeks, and it'll be interesting to see whether I'll finally get a biologic.
Good luck with this, and hope your pain diminishes.
That might be the case regarding the protocals...most likely is. It is different in Canada regarding the insurance plans though, I had a lengthly discussion with them about it and another person I work with who is on Enbrel who never was on a DMARD at all and it was paid for by the insurance company at the rate declared. Different than the US policies.
tntlamb said:
There is a protocol most, physicians groups adhere to it for liability reasons (percieved or real I don't know) What an insurance company says they will pay for and what they approve are two different things. Somewhere in your contract (not policy) you will find a funny clause that allows them to not pay if they haven't pre approved or pay at a lower rate based on their schedule meaning simply they if they decide that you should try their approved drug first they won't supply out of their pharmacy (all health insurance companies in this country are contracted with or own one. So basically they will pay the percentage based on what they think is the cost. With biologics being as much as 20 grand a year even if the pay 80% but you don't get it from them, they could bas the 80% on a 10 gand cost costing you 12 grand out of pocket.
dani7865 said:
Hi Seenie...
Interesting that your doctor had you do the same before moving on to biologics. I thought it was odd, even though I have two private insurance plans, both of which said nothing about having to try dmards before being on either Humira or Enbrel, they just said they would pay 60% and 85% respectively so I will be fully covered...buy my doctor INSISTED that we try the MTX before moving on....I don't get it, but it must be a "standard of care" or something. I am hoping that I tolerate the MTX okay as well and that it does something but she did tell me that it will take 4 - 6 weeks before I notice any improvement....not happy about that!!! I hope you have some better luck with treating yours!!!
Seenie said:
Dani, I do hope the mtx works for you, and I hope your side effects are few. (My rheumy tells me that most people tolerate it pretty well, so fingers crossed.)
I'm interested in what your rheumy described as the "protocol". I'm in Ontario. MTX has done nothing for me, and, like you, my private insurance would cover a biologic. But my rheumy wanted to try sulfasalazine and plaquenil as well. So that's where we're at. I'm not getting better, though. I see my rheumy in a couple of weeks, and it'll be interesting to see whether I'll finally get a biologic.
Good luck with this, and hope your pain diminishes.
Have you tried physical therapy? It's working wonders on my hands and I didnt even think they'd be able to do anything for my hands in PT (was going there for my knees!). Only wish I'd started sooner. Paraffin also helps my hands, as does exercising them (massage, squeeing stress balls, moving my hands in containers of dried rice). The exerise is painful but it is helping. I have less swelling and more flexibility. My PT showed me how to massage and "pull" on my fingers to reduce inflammation. Hope this helps.