Anyone else feel like they are trapped by Psa? I’ve had it for years, and it’s gotten worse. Humira 40 mlg isn’t helping anymore, i go to my Dr in the morning but i have so much pain in my knees, ankle, hips, wrist, fingers, elbows just touching me hurts! I always try to stay happy, but its hard when you are in this much pain. Anyone that can tell me what kind of medications helped y’all that would be great! I’m tired of hardly getting sleep or anything really. Maybe i need to get off of Humira since it’s not helping. Thank you! -Amelia.
It may be time to change biologics. Discuss it with your Rheumatologist. I am sure he/her can help to guide you.
There are other biologics available. Also, you may ask for prednisone for temporary relief, but don't recommend long term.
Amelia, I used those words two days ago. I told my husband that "this disease has me trapped: it’s like it has me cornered. " Nasty feeling.
I hope the doctors appointment goes well. Make a list so that you don’t forget to tell the doctor anything!
That is the feeling I get, too. I wonder if any disease causes that feeling. Because, when you think about it, any disease just takes over your body and has its way with you! I've been thinking about the shots and how sad it is to need to depend on shots to maybe make us feel better. But then, think of diabetics who have to take shots every day in order to stay alive. It sucks, and I hope you find a biologic that works! I use ice packs, heating pads and hot baths with Epsom salts, but you've probably already done that. Good luck with finding a biologic that works.
Thanks everyone for y’all’s reply! Yeah I think I’m going to see about getting on a new shot. Everytime I tell my Dr I’m in a lot of pain he just prescribes me 7.5 Norcos and those don’t help too much with me. I’ve tried prednisone from my family Dr it helped a little bit. I just want relief just like everyone else! Seenie really you did looks like I’m not alone before I joined this support group I didn’t have anyone to talk to about medication or the pain really I talked to friends but me only being 25 none of my friends have Ps or Psa. I listen to a lot of music to help too. I’ve tried all of those I even take a really hot bath and it helps for about 30 mins then I’m back to hurting again ice packs never helped me even when I started hurting it wouldn’t help. I’ve been thinking about getting some biofreeze see if that helps 
Thank you everyone and I hope it goes great tomorrow at the Dr!!!
I hope you had a good doctor appointment today!!! Let us know how it turned out!
Amelia said:
Thanks everyone for y'all's reply! Yeah I think I'm going to see about getting on a new shot. Everytime I tell my Dr I'm in a lot of pain he just prescribes me 7.5 Norcos and those don't help too much with me. I've tried prednisone from my family Dr it helped a little bit. I just want relief just like everyone else! Seenie really you did looks like I'm not alone before I joined this support group I didn't have anyone to talk to about medication or the pain really I talked to friends but me only being 25 none of my friends have Ps or Psa. I listen to a lot of music to help too. I've tried all of those I even take a really hot bath and it helps for about 30 mins then I'm back to hurting again ice packs never helped me even when I started hurting it wouldn't help. I've been thinking about getting some biofreeze see if that helps :) Thank you everyone and I hope it goes great tomorrow at the Dr!!!
I didn’t 
he wouldn’t listen to me about anything. I might just have to find another Dr. He knows I’ve been in constant pain for so long. Idk the Humira just isn’t working.
Sorry the doc didn’t do his job, and you’re left feeling this way. Was this your GP/Primary, or was this your rheumatologist?
How long have you been on Humira?
It’s alright. He wouldn’t do anything for me so now I’m in a lot of pain no Ultram nothing. It’s my Rheumatologist. He’s all I’ve been going to. And they set me up another appointment for September I’m not waiting that long. It hurts way too much. I just got done crying with mine it rains so much here.
I’ve been on Humira for 3 years.
Maybe, as Michael said, it’s time to switch bios. Maybe it’s even time to switch rheumies – can you get in to see anyone else?
That’s what I was thinking both of them. I live in Alabama and there’s not many rheumatologist outside of my rheumatologist office. It’s always a nightmare just to get a appointment there! I think it is time for a new rheumatologist.
That's so disappointing! Why doesn't he change your biologic? Won't he prescribe you a little prednisone to get you feeling better for at least a few days? This is so sad because you are, to me, just a kid and have so much life ahead of you! I hope things get better-and soon--for you--don't give up! It sounds crazy, but if the hot baths help, maybe take a couple more of them each day. Try the biofreeze-Idk what that is, but maybe that would help. If one of my kids (they're in their 20s and early 30s) got PsA now I would be so sad. Just awful to think of you young people having to deal with so much chronic pain!!!! I mean, most of us probably had some hints of PsA when we were young, but a lot of ours didn't become unbearable until we were middle-aged at least. :-(
Amelia said:
That's what I was thinking both of them. I live in Alabama and there's not many rheumatologist outside of my rheumatologist office. It's always a nightmare just to get a appointment there! I think it is time for a new rheumatologist.
Idk why he won’t! I even called up there and asked for prednisone he wouldn’t give me any. I really should of done research on him before I went to him! I read he had a lot of bad reviews from patients in Huntsville! Saying he gave them a wrong diagnosis. I know mines right symptoms are all correct and plus I have psoriasis. The first time I had a appointment with him he said its either rheumatoid arthritis or psoriatic arthritis he did a blood test and said it was psoriatic arthritis. Oh I’ve heard of bio freeze my fathers ex wife has fibromyalgia and she uses it. I’ve never used it though. Yeah I think I had it when I was younger than 19 I was in marching band in high school and a few times my ankle would swell and start to hurt. Dr just said I sprained it somehow in my sleep… Idk I think that’s what was going on everytime it would hurt id just use crutches now thanks to my Dr not doing anything for me for years I’ve gotten worse lost my older brother and grandfather 3 years ago I got really depressed and my ankle started bothering me but I just worked through the pain. A year later I lost my mom unexpectedly after that I went into a full depression wouldn’t talk to anyone and my hip started hurting after that. My Dr office did the same thing then they’re doing now I had to wait months before they would give me my medication because they didn’t have a available appointment and now that’s why I’m so bad off. I can’t use my crutches anymore I’ve been using a wheelchair. I’m needing to get a lawyer I applied for disability last November and got denied in December. With all the pain I still try to stay in a good mood and be positive but sometimes that’s hard! I hate that we all have this disease :(.
Grandma J said:
That's so disappointing! Why doesn't he change your biologic? Won't he prescribe you a little prednisone to get you feeling better for at least a few days? This is so sad because you are, to me, just a kid and have so much life ahead of you! I hope things get better-and soon--for you--don't give up! It sounds crazy, but if the hot baths help, maybe take a couple more of them each day. Try the biofreeze-Idk what that is, but maybe that would help. If one of my kids (they're in their 20s and early 30s) got PsA now I would be so sad. Just awful to think of you young people having to deal with so much chronic pain!!!! I mean, most of us probably had some hints of PsA when we were young, but a lot of ours didn't become unbearable until we were middle-aged at least. :-(
Amelia said:That's what I was thinking both of them. I live in Alabama and there's not many rheumatologist outside of my rheumatologist office. It's always a nightmare just to get a appointment there! I think it is time for a new rheumatologist.
I think being young with PsA is detrimental to our treatment. Which is the worst thing to risk with more years then most ahead of us to fight this disease. We also seem to be more apt to avoid going in for a few years, which means uncontrolled joint damage. I put it off for 3 years… Luckily, my rhum has me on a biologic now, but I am still in the gap. This current flare is killing me. I can’t even care for myself, let alone my kids. But yet, it’s like pulling teeth to get anything to keep my pain under any bit of slight control, and therefore keep me sane. I know there are young people who do just want drugs, but you’d think the diagnosis, current visible symptoms, and obvious lack of control over the disease right now…would be enough. I’m sorry you are being treated so poorly! I also am having a hard time finding a new doctor, but I have hope for my primary care doctor to take over my pain “treatment” at least. Maybe you can find a similar arrangement until you can find a new rhum? With a diagnosis, they might even start you on a biologic.
I agree it is! I don’t like a lot of the risks medication can have on you like cancer. Give me a break already in tons of pain from PsA don’t need anything else! Yeah that’s what happed with me no insurance tried to fight through the pain I probably made it worse. Right now I can’t care for myself either but I’m really sorry to hear that it’s that bad with you. I really hope your shots help. When mine worked it only took a few weeks and I was feeling a lot better. Now not having my methotroxate my psoriasis is flaring up again. Oh I know it is! So hard to find a good Dr! They just think oh she’s young. Hello my Dr I’ve been going to and my rheumatologist I’ve used my crutches and my wheelchair I think my ankle needs to be replaced already. I can’t put any pressure on it if I do I scream in pain and almost fall down crying. So far I really like this group talking to people who really understand what you’re going through and stuff.hopefullyi find a good rheumatologist here! And get off of Humira just don’t know what kind of shot would be best to try. Id like to try the clinical treatment the National psoriasis foundation had something about it on their website. I hope you get to feeling better and the shots help you!!! re
NotGivingUpMyLife said:
I think being young with PsA is detrimental to our treatment. Which is the worst thing to risk with more years then most ahead of us to fight this disease. We also seem to be more apt to avoid going in for a few years, which means uncontrolled joint damage. I put it off for 3 years… Luckily, my rhum has me on a biologic now, but I am still in the gap. This current flare is killing me. I can’t even care for myself, let alone my kids. But yet, it’s like pulling teeth to get anything to keep my pain under any bit of slight control, and therefore keep me sane. I know there are young people who do just want drugs, but you’d think the diagnosis, current visible symptoms, and obvious lack of control over the disease right now…would be enough. I’m sorry you are being treated so poorly! I also am having a hard time finding a new doctor, but I have hope for my primary care doctor to take over my pain “treatment” at least. Maybe you can find a similar arrangement until you can find a new rhum? With a diagnosis, they might even start you on a biologic.
You may be right, Although I read it several times. It was easy when I was young. There was no treatment, maybe a bottle of aspirin. We had heat, cold, and exercise. One thing also different is as you age you learn you can function with a lot more pain than you think. When you have no other options, you do what you have to. It gets better. learning to that is the tough part. Don't ever have the misconception that the right drug combo will make you "pain free" There will be some of those times for sure, but ther will be those other times as well.
I don't know what Amelias doctor's thinking is but let me offer a bit of a different perspective. there is only one major Rheumy group in the Huntsville area and they are excellent. well trained on the edge. not that that is helpful when you feel like crap.
Rheumys frequently get bad reviews. When it it involves 'mis-diagnosed." I quit paying attention. The diagnoses doesn't matter for the most part as the treatment is the same for all 100+ arthritis's. Co conditions are different and they have to think out of the box, but the last thing anybody with PsA wants or needs is a FM or similar DX unless its right. Mis diagnosed from patients is usually "code" for I want to be better and if you just give me the right disease, that will happen because there is a cure for it.
The most dangerous drug we take is Prednisone. As knowledge increases its use is becoming even more infrequent especially with young people and young women at the height of their"hormone years" damage may not be known for years. Whether you like it or not he is looking out for you. It fascinates me that patients will refuse treatment because of SE fear, but get PO'd at a doc who won't give a treatment for the same reason.
Pain medications don't work for arthritic pain. Thats not to say there isn't a place for them but they don't help most of pain and can make it worse. Very few rheumies will prescribe them and in most states a PCP is limited to between 120 - 160 morphine equivilants per year. If you have a doc who won't give them, its not becasue he is a bad doc or a doc who doesn't care.
Now the tough one.... My biologioc 'isn't working" Pain doesn't mean the biologic isn't working. In the newbies section there is a chart of the enthesitis points. If there is no evidence (or scant evidence) of active inflammation, no ethical doctor will change Biologics. These are not pain medications, the y are designed to alter one part of the immune response. They can be working very well and you still may have a lot of pain. Changing without strong evidence of active inflammation is considered unethical. The new med can take 6 mos to work and the only has 50 50 chance (at best) of working. You are subjecting a patient to a lot of risk with no good reason.
Inflammation may not be what you think it is. Your doc is looking for systemic inflammation because the biologics are systemic drugs. Your big toe may be so inflamed you can't get a shoe on or walk. In fact all five of you toes may be inflamed. That isn't systemic inflammation, he won't change meds (voltaren is a good option) He needs 3 widely separated joints on the same side of the body, five on both sides, or elevated ESR or CRP. You may not know this but he does have rules to follow.
The reason we take NSAIDs in addition to a biologic is to take care of these other areas. The reason we take DMARDs is beciase of periperal problems (bios really are best to treat axial symptoms) Unless there is strong evidence of systemic inflammation the docs will play with these meds. keep in mind if you change bios, your docs hands are tied for 3 months as to doing much of anything else. Go to another doctor for medication without his knowledge and use it without his knowledge will NOT be good. All of his work is undone. He will either blow you off, fire you or quietly try again.
A Rheumy does not treat pain, he treats inflammation. It takes months if not years for some parts of your body to recover from the effects of inflammation. Generally the only things that will have an effect on that process are weight loss, physical therapy, and changed mechanics. There may be some surgical options but that isn't as frequent as you may think. Rarely you may get reffered to pain management, who will generally NOT prescribe narcotics without physical evidence of pain, and only then after injections, blocks, physical therapy, and weight loss fail. If you have mobility aids NOT prescribed by a doctor, they will do more harm than good. pain management will take them away in most cases.
Now this may or may not apply to anyone here specifically but I would suggest you digest it read it several times and at the very least consider it as a base for questions/discussion with your doc.
Also ESR and CRP very much are important measures. They may never be abnormal but over the course of your treatment they will vary enough to be a very accurate barometer as to whether or not your inflammation is systemic.
Incidentally unless you are a teenage boy with Chrons disease cancer is not a risk from any of our meds. Melanoma is a slightly higher risk, but everybody with PsA need checked yearly anyway.
NotGivingUpMyLife said:
I think being young with PsA is detrimental to our treatment. Which is the worst thing to risk with more years then most ahead of us to fight this disease. We also seem to be more apt to avoid going in for a few years, which means uncontrolled joint damage. I put it off for 3 years.... Luckily, my rhum has me on a biologic now, but I am still in the gap. This current flare is killing me. I can't even care for myself, let alone my kids. But yet, it's like pulling teeth to get anything to keep my pain under any bit of slight control, and therefore keep me sane. I know there are young people who do just want drugs, but you'd think the diagnosis, current visible symptoms, and obvious lack of control over the disease right now....would be enough. I'm sorry you are being treated so poorly! I also am having a hard time finding a new doctor, but I have hope for my primary care doctor to take over my pain "treatment" at least. Maybe you can find a similar arrangement until you can find a new rhum? With a diagnosis, they might even start you on a biologic.
Lamb, this was very informative, and should be considered for possibly adding to the "newbies" section, thanks so much. I, personally, got a lot out of it, and plan to re-read it later and will probably get even more.
I agree, Lamb, it is thoughtful, insightful and well written. Please add this to the Newbie section. This gem should not be mis-placed.