My rheumy thinks in the long run plaquenil will not be enough for me and I will have to go to the next step.
My question is, if plaquenil doesn't work, what is the next step of medication?
Rheumy is very conservative with meds and always looks for the smallest dose possible and the least amount of meds. But the way my joint and skin pain has been going I may need bigger guns. We're waiting till my next appointment on July 23, then I will have been on plaquenil three month.
Right now I am on two 200mg plaquenil, three 300mg gabapentin, three 30mg pamelor, two 5mg prednisone, one 2.5mg norvasc, one 40mg nexium plus vitamin D3, B2, B6, flaxseed oil, evoxac and restasis.
I had immidiate relief after the gabapentin was added, but after a week my tactile alledonya (sp?) and joint pain is increasing again.
Biologics?? Or more prednisone.
Scary stuff!
I don't think he would step you up to the biologic drugs yet. I was in your shoes. I moved up to methotrexate and had good success except for hair loss, and so my doctor switched me to Arava. My hair is holding steady and might be growing back very slowly. I have not had any side effects, and up until I had surgery, I went about 3 months without any joint pain--at all!
I have been on it for about 5 months, and I am going to start tapering off prednisone in a few weeks, hopefully, after my post-surgical flare (ACL reconstruction) calms down.
I had the same initial response to gabapentin. I had immediate relief after one capsule for 24 hrs! Now, I am up to 300mg thrice daily, and we will probably increase the dosage a bit at my next appointment. I take it for generalized pain, especially my hands and feet.
Good luck to you. I hope you find something that helps.
I've had great results form methotrexate, and not many side effects for the last 15 months. The first couple of months I did have side effects - had to get used to it. Bot now the only lasting one is that my hair is thinner and not as nice a texture...but quite a bit of the initial loss has grown back. I had a lot to begin with, so I guess I shouldn't complain. Its worth it, to feel better.
If you search the forums for the word "methotrexate" you will get a lot of good info on that alternative. It's often the next step up from Plaquenil because it's been so well-studied, and is very effective for many people. It's not without drawbacks, of course - no drug is - but it's better than letting the disease eat you up!
Tharrell...Hello, posting to lend you support.
From your posts your Dr. is thoroughly checking you, and it is so difficult to wait for labs..answers. I personally do not go to Drs. who give a whopping med cocktail. I like to keep it as simple as possible, for as long as possible.
"I had immediate relief after the gabapentin was added, but after a week my tactile alledonya (sp?) and joint pain is increasing again."
It is probable that these meds are working, they relieved your sensation of pain...and then pain at a higher level...has a break though effect...so you feel the meds are not working. Whereas, if you were not on the meds, without a period of relief ...it would have been another day with pain at a higher level...does that make sense?
So what is exacerbating the pain? Right now you are having a number of labs, and an impending Dr. appt.
A great deal of emotional "roller coaster rides".
I would be in stress overload.
It really does put us in a place of limbo, and a degree of helplessness when a stranger in a lab or whoever/wherever knows more about our bodies than we do.
Can you take a 10-15 minute walk...studies really do show even a short walk will help with pain. More to do with endorphins, etc. in the brain.
When I am stressed I do not even watch the news...turmoil, never anything to lift the soul. It is actually less stressful to read the news.
Be kind to yourself, as you would to someone else in your situation.
Hopefully your Dr will have some answers, suggestions and a treatment protocol for you on the 23rd.
Three months is a short time to be on Plaquenil, which typically takes at least 6 to have full effect. I've been on it for 6 now and feel much better than I did at 3 or even 4 or 5 months. I used Tylenol in the interim and it helped. However, we are all different and you may need something more.
You can wait to see if the plaquenil kicks in later. Otherwise, the literature recommends starting methotrexate somewhere between 7.5-15mg per week.
I hope you feel better. Try to minimize your prednisone intake as best you can.
Styx
Thanks everyone for the great replies! I don't think the prednisone is doing anything for me which confuses the heck out of my doctors. I'm now down to two 5mg of prednisone.
I know whatever my rheumy thinks we need to change on meds is going to be at the lowest dose possible.
I am in the swimming pool everyday for a couple of hours playing badminton plus I hope to go back to my martial arts in a week or so.
Quitedynamics, I know your right. i need to take a deep breath, what will be will be. I'm just worried that if I do need surgery I'll get it done before school starts again and I'll be ready for another school year.
Just trying to get educated ahead of time so I know what to expect and can make the right decision.
My rheum said that, after plaquenil, the next two drugs to consider are methotrexate and azothioprine.
Fwiw, although I don't take it for pain, I've had no problem taking lyrica longterm and it's main purpose is pain control.
Prednisone...gotta be careful with that because if the dose gets too high, you end up with secondary problems (er, literally secondary adrenal insufficiency; the steroid dose is high enough that your body thinks there's enough cortisol so shuts down the hypothalamic-pituitary-adrenal stress pathway). That's not to say it's a bad med to take. I was on cortef for 10 ys and every time I tried weaning (because I would move and get new docs who wanted me to try), I would have problems. Newest docs think that, regardless of the status of my adrenal insufficiency (whether it's better or not), it's likely that the cortef is helping to suppress autoimmune problems. So new endo wants me to try weaning completely off but it's the ONE drug I'm on right now that seems to be helping at all with my AI stuff so........
Next step depends on what your doctor thinks is the underlying issues for your pain. For example, if it's mostly inflammation, s/he may suggest an anti-inflammatory. I take mobic, which is my doctor refers to as her "secret weapon". It helps me with joint pain, but not with muscle pain. Prednisone is a very different form of anti-inflammatory, with many long term side effects.
If your doctor wants to slow the immune system, s/he might recommend an immunosuppressant, such as methotrexate, or cellcept (or many others). Each has a different possible set of side effects, and the appropriate med and doses depend on your particular needs. The goal here is to slow down the damage to your system by damping down the autoimmune process.
I will mention one other thing - you seem to have a very high level of physical activity. I'm both jealous and happy for you - many of us don't. But be sure discuss it with your doctor - if there is some possible joint damage going on, your doctor needs to know your exercise profile. Water exercise is generally very good, as your body is supported by the water. However a vigorous exercise like a martial art may put stresses on the joints. On the other hand, it may be very good to keep the joints mobile. So do make sure you communicate with your doctor.
Short version - there is no one "next step". Depends on your issues, your tolerance for various meds, and what actually ends up working.
Best of luck!
excellent advice from everyone...I dont think you have given the plaq enough time. I know your anxious to feel better, but the next step would be methotrexate, and that can cause some issues. I tried it, as well as several other medications, and ended up with severe systemic yeast-infections. I also have some immune def disorders though.
They say the plaq can take up to 1 year to kick in. I ended up increasing my steriods to almost 20 mg a day now, and have
all the nasty side effects from it. Im trying to wean off, but just cant.....not many options.
I take Motrin and tylenol daily, and that seems to help a bit with pain.
Gursie
Thank you all, all the advise has been very eye opening. I have a lot of material to research for!
The martial arts has been on hold for two month, but hope to resume it pretty soon. I don't do a lot of impact like sparring very much anyway, because I had a spinal fusion done between L5 and L3. I no longer hold boards for others to break, because the impact hurts my hands.
Prednisone causes no side effect on me. I was on 5mg three times a day for a week and am down to twice a day now. Actually I don't think prednisone does anything for me.
Maybe the joint and muscle pains are not inflammatory? I don't know yet what else causes these pains. The head to toe skin pain is puzzeling as well. So is the fact that if you lightly rub my skin anywere on my body it hurts and makes me dizzy. Neuro has never heard of such a thing.
Very loud, sharp noises make me dizzy as well and it's not of the vertigo or bpv kind.
The only true dizzy vertigo type I get is from standing up to fast. The other dizzyness is more on the roiling, buzzing kind.
I'm researching "Chronic Subjective Dizziness" and "Visual and Auditorial Disturbance".
Problem is that no doctor has heard of it.
This is why rheumy is looking my over thouroghly because she thinks there is more going on besides auto immune and she doesn't want to miss anything.
I have 6 weeks left till school starts and waiting two to three weeks for an appoinment is eating up my time off. I wish everything could be scheduled faster so I am done withh all the doctor visits before going back to work.
I don't particularly care anymore what the doctors find, that really doesn't worry me as such.
I just want to find the right treatment for the pain and solve the dizziness once and for all. The dizziness right now tops my list, because it's the most dibilitating for me.
The dizziness upon standing may be postural hypotension. The brain is not getting enough oxygen because the body is not appropriately shuttling blood up there and gravity pulls it to your toes. Those with adrenal insufficiency have this, and increasing salt load (or if that doesn't work, taking medication for it) helps.
The other dizzy spells.....I had something similar when my neuro problems were at their worst 10 ys ago, at the onset of all this. But in my case, it progressed to severe neurological problems including 6th nerve palsy and complete loss of balance. But initially, anything that could startle me, even to the point of simple movement, would cause dizzy spells (and then, at one point, my eyes would rip up into the back of my head briefly.... at that pt, I went to the ER!). And.....periodically over the years at night, mostly after stressful days, I would be "hyper-startleable". I don't know what caused any of it, though. I went to ALL the doctors (including ENT to rule out inner ear disturbances, tried the anti-dizzy meds, etc), and nobody knew. I was in-patient for a total of ten days over two hospital visits (within a month) and was tested up the wazoo while there, and the only thing they could diagnose was seizure disorder (the cause for the second admission). BUT. Most recently, after a new move and with new doctors....the rheum (whom I can't get back in to see because she's so booked), the neuro, and my family doctor all think that it's likely that all the onset symptoms were probably autoimmune (and the rheum and another new neuro specialist suggested Sjogren's).
I have all these symptoms too...diagnosed with POTs, and Im guessing the SS effecting the neuro issues.
I have the spinal issues too? wow, seems alot of us do?
I was on 10mg of prednisone for years without any side effects..I didnt think it was doing much either.
Then, after having to take some medrol after a bad IVIG reaction, I noticed the medrol really seem to help me.
We'll, after about a year on it, all the side effects kicked in.....swollen face, lost more hair, bone-eye issues, etc.
I take 8mg a day of that, and cant get off of it..wish I could.
They say up to 10mg a day of pred your pretty much ok, anything more than that increases your risk of side effects. I think
the medrol has helped me much more than the prednisone ever did?
I used to be able to take vicoprofen for the pain-fatigue, and it was my miracle drug. 1/4 tab a day and it was great, until after my hysterectomy 7 years ago. I tried to take some and I literally flipped out. It seems to really aggravate my CNS.
Hope you can find something that works for you!
Gursie
Quote from: Tharrell on July 07, 2013, 05:27:19 AM
I just want to find the right treatment for the pain and solve the dizziness once and for all. The dizziness right now tops my list, because it's the most dibilitating for me.
Hmmmm. In that case, MTX might not be the answer... neuro issues are tough. I presume they've performed MRIs, etc.?
You could give it a shot though.
In terms of safety, MTX is a multivitamin compared to prednisone :)
Styx
For my case I went to Cellcept (mycophenolate mofetil) after 2-3 years of Plaquenil. I also have kidney and cns involvement. 5 weeks of Cellcept (500 mg twice @ day) was enough so far....to begin a remission....it's been a month since I completed that course.