It's been about 2 months since I started a second medication, since then PsA has spread to my thumbs, swollen and burning much of the time. In addition, all my fingers on my right hand are now affected. Some of which the pain has just started.
I've had to go back to advil because I have been in so much pain most days. I have trouble doing pretty much everything. My plan is to try to see my doc asap. I need a shot in one finger before I completely lose use of that hand. I called last week and spoke to his office about increasing the dose of one of the meds which was fine but I'm not sure I can or should wait any longer.
If anyone has any suggestions on what I should speak to the doc about I'm trying to find ideas. Naproxen in my opinion isn't doing anything. Mtx I as on last year but couldn't take it, too many side effects. Now I'm on Sulfasalizine and Plaquenil. I think Plaquenil helps more, the dose has just gone up but I'm not convinced it will be enough.
I'm going to a PsA clinic in November but have to find some sort of solution until then.
Keeping my job is very important to me. Once thing I need to be able to do is pick up and pen. I've had trouble with that most days, unless I take advil.
Oh, Dini. After two months, it’s beginning to look like it, isn’t it? A trial of two weeks tells nothing, but if you’re getting worse after two months, you have to wonder whether the new medication is doing anything for you.
Can you see your rheumatologist before November? Might you be able to ask for a cancellation appointment to speed up your PsA Clinic consult? Meanwhile, I guess all you can do is take whatever gives you some pain relief.
Yes, Seenie. I agree. I don't know if I can get an appointment at the clinic sooner but it's worth a try. It's amazing how something as simple as Advil can make such a difference. It's feels good to be able to get a few things done without struggling and in pain. I'll have to go with whatever works for now.
I'm hoping to have some ideas to discuss with my Rheumy at my next appointment. Thanks for the input.
I think taking Advil until your appointment is reasonable if it gives you relief. I found Naproxen worked best for me. I take 500 mg morning and night with 1000 mg of Tylenol. If necessary I take another 1000 mg of Tylenol mid day but don't need to do that very often. Remember max daily dose of Ibuprofen (or Advil or Motrin) is 2400 mg or 800 mg 3 times a day. The max of Tylenol is 4000 mg or 1000 mg 4 times a day. Some people alternate them for greater relief. I take my Naproxen and Tylenol together as I can't seem to remember it otherwise. We need to take the NASID (Ibuprofen or Naproxen or Celebrx or similar) to reduce swelling and inflammation but we can add Tylenol for greater pain relief.
I am not advising anyone to take any meds. I am a nurse. Before any change in your medications please check with your Doctor. I am only stating what i do.
Thanks. I had never thought of taking those together. I will talk to my doc about it. For now I agree, I have to take Advil to get by and not be in constant pain. I am now taking 2 advil twice a day. Just enough. I used to take the Naproxen, 500 mg 2 times a day but it didn't do anything.
Dini- Speak to your doctor about different options for NSAIDs. Different meds will work differently. Right now I'm using diclofenac. . . my rheumy says that it has better pain control. But this will be different for all.
Hi Dini. I am currently on Enbrel for 5-1/2 months and nabumetone which is the generic for Relafen. I have been tried on numerous antiinfammatories and really like this one. I can take up to four 500 mg a day and only need 2. I was having trouble finding a NSAID that did the job and I think this is the one for me. I was getting discouraged in the beginning and my rheumatologist told me there are a lot of antiflammatories that we could try until we found one that worked for me. I am now able to walk 5 miles per day without pain. Good luck. Don’t get discouraged.
Thanks Bertsdeb for that encouragement. That's really good to hear. I'm glad you found what works. I'm worried about it taking too long to find what's for me.
I am also concerned that my Rheumy only books me an appointment every 6 months, even when he knows I'm having trouble. How often were you seeing your Rheumy when you were sorting this out with different meds ?
Six months is a long time. It is partly dependent on meds and need for blood work. I started out every four months, but that was when minimal meds were being used. When I added in plaquenil it was every three months.when I added in MTX it was every. Two months to begin with, same for when I switched to leflunomide. I have also occasionally had to make extra appointments. For example, for a major flare or sudden illness that I couldn’t get control over.
I had an office that did the same thing- book me for six months out when I came in practically crawling. I ended up leaving that office. I just didn’t think that they were very concerned about me, and I wanted a doctor who felt that living like this is unreasonable.
Hi Dini. I am currently on Enbrel for 5-1/2 months and nabumetone which is the generic for Relafen. I have been tried on numerous antiinfammatories and really like this one. I can take up to four 500 mg a day and only need 2. I was having trouble finding a NSAID that did the job and I think this is the one for me. I was getting discouraged in the beginning and my rheumatologist told me there are a lot of antiflammatories that we could try until we found one that worked for me. I am now able to walk 5 miles per day without pain. Good luck. Don't get discouraged.
Hi again, Dini. In answer to your question to me, I have appointments made with my rheumatologist every 3 months. I have blood checked every 3 months and he goes over it with me on our visit. If I have any bad flares or need to see him sooner I can Email him and he gets right back with me and sees me sooner if he needs to. It took a trial of 3 different NSAIDs before I found the current one that works well for me. Do you feel comfortable talking to your current rheumatologist about getting 3 month appointments instead and asking him how you should handle flares? I know how scary those are and it can really put your mind at ease knowing you can easily get in contact with your rheumatologist at these times. By the way, how often do you have to have blood checked? Good luck, Dini.
Thanks Stoney and Grumpycat. That's how I am feeling. Despite not having an appointment until December, I will have been in to see him for 2 additional appointments since July. I don't feel that I am being monitored properly. My blood work is very 42 days so he gives me a requisition that's good until my next appointment. I feel that every 3 months would be acceptable and at that point he should be checking to see how the meds are working and if we need to switch.
I have wondered if he has ever treated anyone with PsA before. Sometimes it seems like they know all the literature, but don't know how to work with the patient and properly monitor the problem. Thankfully I will be going to the PsA clinic in November. I've never been so excited about a medical appointment before :)