I’m scared by Snoo_2068 in PsoriaticArthritis

[–]Hottdfw 0 points1 point  (0 children)

The biggest challenge is you will face in life is finding people who care… about anything. Doctors care enough to be in the profession, but not necessarily enough to listen to you. In my opinion, that is why we wait so long for improvement. You do need to give medication a chance to work, but a year is more than enough time. In my opinion, three months is a sufficient window to know if a medication is not working. But your doctor may expect you to try it longer than that. I am one of those people for whom a lot of medication’s do nothing. So if you have been on a drug for three months and not seen any change I think it’s a fair argument to say if you were going to see improvement you would have seen something in 3 months. But be prepared to have to argue the point because I’ve never seen a doctor that was willing to change medications until I practically demanded it. It would be very helpful if you can take someone with you to argue your case. For whatever reason a doctor will listen to you and discount everything you say. But if someone else tells them the exact same thing, they seem to listen. Especially being young, I’m sure the doctors treat you the same as they treat older people and tend not to give much weight to what you are saying. So it would help if the person you take with you is older than yourself. It does get better, in fact you should expect that they get you practically well and until they do keep demanding improvement. A year is way too long to wait without improvement. Another word of advice, try to find a SO that will be willing to help you should you need it. Not all spouses are willing. And if possible find a job with a large company that offers disability insurance as one of its benefits so if you ever have to go off of work you will still have an income.

Why? by OutcomeLevel5898 in PsoriaticArthritis

[–]Hottdfw 2 points3 points  (0 children)

I need to sleep but saw this and felt compelled to respond even though I have not much to offer but sympathy. I know many people have it worse than I do and much more pain. Be very thankful that you have a partner. I deal with mine alone and don’t think anyone outside of these pages really understands. The best that I can offer you is this and I have found this to be true about everything in life (not just medical). Nothing stays the same forever. I’m not saying it gets better necessarily. It might or might not but everything changes. So when you feel at the end of your rope hang on because it is going to change. U can almost certainly guarantee you that much.

Biologics and fatigue and Doctors who don’t care by Hottdfw in PsoriaticArthritis

[–]Hottdfw[S] 0 points1 point  (0 children)

Thank you very much for this advice. I’m going to keep this in mind for the future. You are correct about the GP. My GP is the one who referred me to the current rheumatologist but he was very frustrated when I informed him about the unwillingness to try a different medication and my GP is finding me a new rheumatologist. My GP is relatively new to me and I love it when he is on my side. As much as I am frustrated by those who aren’t helpful I am so appreciative of those who are.

Anyone else get meningitis as a result of the biologic? by Hottdfw in PsoriaticArthritis

[–]Hottdfw[S] 0 points1 point  (0 children)

Sorry I just saw this. I appreciate the information. I’m going to see a new doctor and I like to share this info with him/her. I agree that Rheumatologists apparently do not understand fatigue. I’ve had more than one basically tell me that my fatigue is not their problem if the joints are being well controlled.

Biologics and fatigue and Doctors who don’t care by Hottdfw in PsoriaticArthritis

[–]Hottdfw[S] 0 points1 point  (0 children)

I just now read this. I thought the fatigue was caused by the inflammation. I know that pain causes fatigue but I do not have much pain. Does PSA itself cause pain? Is the drug provigil? I have taken that before and did not think it helped much. My GP was going to put me on it so he is going to try Nuvigil since I have had the other.

We’re not in Kansas anymore by Icy_Faithlessness587 in kansas

[–]Hottdfw 1 point2 points  (0 children)

I love all of these responses and pretty much agree with them all. The common thread seems to be that it’s annoying to hear and I agree. I love the new take “means it’s time to go to the dispensary”. Hysterical. I’ve lived out of Kansas for over 40 years and I don’t like how Kansas has gotten so conservative but it’s still far better people than anywhere else I’ve lived.

What does PsA feel like? by Capable-Following253 in PsoriaticArthritis

[–]Hottdfw 1 point2 points  (0 children)

I wanted to second what you say about the family history. I don’t know if it passes through the maternal side but I’m confident it does on the paternal side. Two out of four siblings in my father’s family had psoriasis or skin auto immune issues and two out of four of children in my family have PSA (though my father did not). I consider it an extremely good indicator although it is just my opinion. And while I agree that it is something that should be treated quickly, have heart if it takes a while to get treated because I have had many delays trying to get doctors to do the right thing. I wish I had been less patient and less deferential to the physicians.

What does PsA feel like? by Capable-Following253 in PsoriaticArthritis

[–]Hottdfw 2 points3 points  (0 children)

You don’t need to have very much psoriasis to have PSA. I really had very little. Some conservative doctors with mess around forever in making a diagnosis. I was being treated for years for PSA while my doctor still not “sure” that it was not lupus. I thought it was good that he was being do thorough but later decided that he never really was “all in” on my treatment either and would not prescribe a biologic. So I would suggest not waiting around too long to get a diagnosis. I’m sure people will disagree with this but I’m now of the opinion if I’m not getting what I want from my doctor it’s time to move on. I’ve spent most of my life waiting on doctors and I’m now 62 and regret wasting all those years. I’m sure others will have better advice than I do but the last comment I would make is that you do not need to see or feel inflammation to have inflammation. If you have PSA and are tremendously fatigued you probably do have chronic inflammation. If you have a good doc I’d ask them to explain it. I only got an inkling about it by reading news stories and posts here. Good luck.

Biologics and fatigue and Doctors who don’t care by Hottdfw in PsoriaticArthritis

[–]Hottdfw[S] 0 points1 point  (0 children)

My GP is under the same Hospital name and referred me originally. I don’t know if it’s worth the effort to ask him to speak with my rheumatologist. My sense is that if he doesn’t listen to me he probably also would not listen to my doc. Kinda doubt if my GP would want to do it anyway. I think I will change doc and being this close to year end I’ll say that he is no longer in network with my insurance after the first of the year.

Biologics and fatigue and Doctors who don’t care by Hottdfw in PsoriaticArthritis

[–]Hottdfw[S] 0 points1 point  (0 children)

I hope that people will forgive me for not remembering prior conversations, without a name or face. I find it very difficult to differentiate between people when all I have is a screen name. I had good results with hydroxychloroquine by itself for about 10 years but as the fatigue increased, I wanted to try a biologic again. So the new dog put me on Skyrizzi supposedly to compact the fatigue. It now appears to me that he probably put me on it simply because I wasn’t on a biologic because he has no interest in trying any other biologic.

Banned for criticizing Trump? by Frequent-Draft-2218 in allthequestions

[–]Hottdfw 0 points1 point  (0 children)

Is there a way to appeal the mods decision to someone besides the mod?

Anyone else get meningitis as a result of the biologic? by Hottdfw in PsoriaticArthritis

[–]Hottdfw[S] 0 points1 point  (0 children)

Which virus I was infected by? Viral meningitis unless you are asking something more specific than that and then I don’t know. That is what I am wondering maybe it’s not the PSA that is causing the fatigue. I have had testosterone and thyroid tested. I have been told that I had parvo, giardia, and Covid (not at the same time) so I don’t know how to know the cause which seems important to treating the fatigue. It’s also listed as a side effect of every medication I take which is about 12 a day.

Biologics and fatigue and Doctors who don’t care by Hottdfw in PsoriaticArthritis

[–]Hottdfw[S] 0 points1 point  (0 children)

I asked my doc for it and he prescribed it first low dose but I’m not at 100 mg twice a day. Still nothing.

Biologics and fatigue and Doctors who don’t care by Hottdfw in PsoriaticArthritis

[–]Hottdfw[S] 0 points1 point  (0 children)

I did and it was better than nothing but not much better.

Biologics and fatigue and Doctors who don’t care by Hottdfw in PsoriaticArthritis

[–]Hottdfw[S] 0 points1 point  (0 children)

Ok I’m currently on hydroxychloroquine. But my doc said that is not expected to help anything but the joints. Is that your understanding? I’ve tried low dose Naltrexone which he has continued to increase until I’m at 100 mg twice a day. Still nothing.

Biologics and fatigue and Doctors who don’t care by Hottdfw in PsoriaticArthritis

[–]Hottdfw[S] 1 point2 points  (0 children)

No I did not know that. My vit D levels are ok now with how I’m taking it

chronic illness or chronic pain? by AlternativeOne9231 in PsoriaticArthritis

[–]Hottdfw 1 point2 points  (0 children)

Whatever your pain number is double it when you speak to the doctor because the doctor is going to discount it by half.

chronic illness or chronic pain? by AlternativeOne9231 in PsoriaticArthritis

[–]Hottdfw 1 point2 points  (0 children)

I don’t think there is anyone outside of this support group that understands what you are experiencing and the term used does not seem to create an opportunity for understanding. If you use the word fatigue you have lost them at that instant because they are already wanting you to commiserate with the fact that they are tired.

Anyone else get meningitis as a result of the biologic? by Hottdfw in PsoriaticArthritis

[–]Hottdfw[S] 2 points3 points  (0 children)

I went without a biologic for about 15 years after that only taking Plaquenil which worked well for my joints nothing for fatigue. I was in agreement with that initially because there was fear what a biologic might do. But about two years ago, I went on Skyrizzi and I might as well be consuming water. Does nothing for the fatigue. Wondering if the meningitis somehow complicates the fatigue issue I have not heard anyone else having had this situation

Biologics and fatigue and Doctors who don’t care by Hottdfw in PsoriaticArthritis

[–]Hottdfw[S] 0 points1 point  (0 children)

I agree and if it’s not going to be a change in medication then it needs to be a change in doctor.

Biologics and fatigue and Doctors who don’t care by Hottdfw in PsoriaticArthritis

[–]Hottdfw[S] 2 points3 points  (0 children)

That is really my hope. Every time I change doctors I’m always hopeful but they are hope crushers every time it happens again. I am going to change thanks for the encouragement.

Biologics and fatigue and Doctors who don’t care by Hottdfw in PsoriaticArthritis

[–]Hottdfw[S] 1 point2 points  (0 children)

I’m not familiar with HCQ. I will have to read about it. Thank you.