What do you expect to get from your Meds?

I have another rheumi app this morning,she upped my Remicade dosage 2weeks ago. I don’t know what I’m going to tell her,how do you know if something is working or not. She thought my swelling had gone down last time but my pain had increased. I’m not sure whether my expectations are too high. Do we need to look at alternative pain meds? I don’t tolerate super strong meds and my GERD issues are coming back. I’m going to see if she thinks PT will help,what could an OT help with? Any advice?

How long have you been on Remicade? How often do you get an infusion? That can make a big difference. I didn't see a huge difference until around 6 months after my first infusion, as we worked with dosage and timing. I go every six weeks and get a fairly large dose. Different things work for different people, so talking to your doctor about what else you can do to help relieve your pain is a good idea. For me, it's finding a balance between rest and movement - too much of either is bad for me.

I’ve been on it for 8 months,never going more than 6 weeks. I’m up to the 600 dose.

Actually she will be able to tell if there is some progress from the drug. There are 14 spots on the body that they check some of, or all of to see if there is progress with inflammation control. There are some other things the y measure as well. One of the more critical is the length of morning stiffness. If its declining, the meds are working but also more importantly, they know through various means of PT stretching movement etc progress can be made. Much of the work done by your rheumy has little to do with your "pain" and everything to do with disease control. One would think getting the disease under control would improve pain levels, but that is not always the case. Sometimes permanent damage causes the pain, as will poor mechanics posture and lack of movement. The ONLY thing that will help in those cases is PT and/or OT. Somrtimes you have used opiate (as opposed to opiod) pain medications which in and of themselves can cause pain and you have to work through that process of returning the pain center function to normal.

This is a process, you need to keep very careful track of whats going on first to help your doctor and secondly to help you. There are some apps to do this, there are check lists etc. or a diary. But do it. A lot of work has been undone because of "increased or too much pain" it may feel that way, but it may not be the case. Pain is a very undependable measure and is relative at best

OT is often considered to be "fine motor control" while PT is the "big stuff" this is only partially true. It takes some work to fine a great OT (same with PT BTW) as they tend both deal with the same things OT's to get old folks home and PTs to avoid or recover from orthopedic surgery.

BUT a significant portion of an OT's training is in the area of Sensory modulation. Or put another way get the body to respond the way its supposed to to stimulus.

My granddaughter can not wear most types of clothing as it is painful (and it is) We just went school shopping in Seattle and sure enough after crawling through the boutiques and department stores she came home with 6 pairs of boys compression boxer shorts and six pair of hanes sweats. BUT after 3 years of OT 3 times a week she went to school with a sports bra (She has c+ cups) a tee shirt under her hoodie and more impresssive than anything real shoes and socks and girls panties. She was so proud of her self!!!! and so was grandpa. She made it to noon before the pain became too much. Fortunatly I had sent her "nanny" (hab aid) to school with her and got her squared around pretty quickly.

Sensory modulation is important to us as well. people who have suffered with long term pain have screwed up sensory systems that tell us pain even when there really isn't. We have two choices when that happens we can blast our selves with pain meds which ultimately make the problem unbearable and us disabled or we can work on it OT's are great along with some othwer specialties. But the OT's techniques of Sensory modulation and self soothing can make an incredible difference.

Thanks Lamb,I just got back Shes not happy with the Remicade & I’m switching to Orencia. She’s also adding in Celebrex & Cymbalta. I’m also going back to PT for my shoulder & SI joint.

Keep us posted. The PT for the SI makes a huge difference. I think you'll see some results pretty quickly.

What I expect / hope for from my meds is 50% improvement in symptoms. I don't have a lot of permanent damage, despite lots of pain / inflammation / stiffness / fatigue / blah blah blah.

I've always had pretty low expectations for meds, and am impressed if I get 50% help in things listed above. Occasionally I've had 95% help from meds, and that's pretty amazing. My expectations get lower the longer I'm in a flare. At my worst a couple years ago I was ecstatic at a 20% improvement.

Your doctor should also listen to how you feel. My old rhume told me if there’s no swelling, don’t bother him. Stelara has done a fantastic job with the swelling. However, I still a lot of pain. My dermatologist said I have visible inflammation in my hands, hip, and shoulders. I never complained about my shoulders. All that information from a physical exam. Old rhume has been fired.

I expect amazing results. I will accept nothing else. Perhaps I have been spoiled because MTX brought me 100% remission for my PsA and now Enbrel has 100% cleared my Psoriasis. But in my opinion most of these meds are just too dangerous and too risky to take long term without seeing significant results. Marginal results would not be worth the risk for me personally. Now this is just MY personal opinion only, I know most folks on here would disagree. I believe you have to weigh the pro's and con's, risks and rewards.

I have 30 yrs experience with PsA and bucketloads of medication. My body has had brief (1-3 yr) remissions (one medication induced, the others for no reason). In the long haul, you will understand there are only so many meds, and so many combinations. Your body simply may not cooperate with even the best treatment.

Chris said:

I expect amazing results. I will accept nothing else. Perhaps I have been spoiled because MTX brought me 100% remission for my PsA and now Enbrel has 100% cleared my Psoriasis. But in my opinion most of these meds are just too dangerous and too risky to take long term without seeing significant results. Marginal results would not be worth the risk for me personally. Now this is just MY personal opinion only, I know most folks on here would disagree. I believe you have to weigh the pro's and con's, risks and rewards.