Hey everyone. I’m brand new to the forum. Im a 27 year old guy, just diagnosed with PsA last week. All My rheumatoid factor and anti-ccp are all negative, and I have VERY mild skin involvement only one small spot on my elbow, and one on my lower back that are well controlled with cortisone creams. So I guess im lucky that the skin is not a huge issue right now.
My joints are another story. I have had mild on and off pain for years which would come and then go away for long periods of time, so I never worried about it. The last few months it has been worse. Its bad in my elbows, knees, ankles and 1 foot. My hands seem fine.
Anyway I went to my GP, than a rheumatologist and just finally got the PsA diagnosis. On an x-ray of my elbow he said he saw once small spot of early damage, so he wants to be very aggressive with treatment. He wants me on a biologic, but for insurance I have to try both sulfasalazine, and methotrexate first. He said he will try to move me along as quick as he can to a bio.
Anyway I guess I’m so new to this, and I’m really worried about the side effects for the drugs. They all seem so scary. My dr said take a few days and think about it but he highly recommends starting asap.
They all scare me, and I feel like im young, and I really just hope this is something that I can live with and have a happy active life. I want to have kids, and a family and I know people can manage PsA well but finding out I have it is just a big sock and I’m worried.
Hi welcome to the psa group. I am 36 mom of three and I too was terrified of the meds. I have been on biological humira for almost a year. It has given me my life back. Please read my profile for further explanation. Do yourself a tabor and trust your doctor. Yes the drugs can be scary. But I would rather be able to live my life as I CHOOSE not how my psa chooses. Hang in there and know that you are not alone. Blessed be.
Thank you very much. that means a long to me. I know im over reacting a bit. I think im just so new to this, and have yet to start any treatment. So im just overly worried.
Remember Docs are also business people, they want to build up a large and regular clientele so they have a steady income. Despite some real personality difference (they guy you hate someone else love's) if they don't make people feel better their business fails (Rheumy's are 100% dependent on making people feel better) If they kill their patients with bad drugs or make them wish they were dead because of side effects, they fail
The number ONE thing you have to watch out for are the docs who try too hard to make you feel better and over prescribe the "feel good drugs." Those being steroids and Narcos. Those docs are sadly VERY popular with Chronic illness patients. These are the ones folks say "listen so well," and "really care"The steroids have SERIOUS long term effects and will cause some other nasty diseases (diabetes is very common) The pain meds actually can cause more pain (in as little as 30 days) and make everything more pain sensitive (the first time you need "more" and little has changed you are in trouble) There are getting to be fewer of these guys, but they are still out there.
Yea that compleatly makes sense. My dr does seems good. I havent even been offered any prednazone or pain meds yet (other than aleve which i only take when i really need it) so i guess thats good.
As far as sulfasalazine goes do you know how safe it is? I filled my perscription but im nervous to take the first dose. My dr is very nice but VERY blunt and gave me a whole list of rare but potential side effects which definitly made me nervous
I know how you feel. I’m 25 and was diagnosised a year ago. It’s a lot to take in. I recommend you do your research and understand that some of the side effects listed on methotrexate are for high doses for certain types of cancer. I’ve been on biologicals for almost a year and the side effects are minimal. Be sure to stay positive and be your own advocate. You know your own body better then anyone else if something doesn’t feel right then you should talk to your doctor, but also trust that your doc is trying to do best for you too. It takes time for any of the meds to work. The sooner you start treatment the sooner you’ll get to the best treatment for you.
Hi! It’s ok to freak out about the potential side effects they have to list. But as everyone above said – take that first dose and let yourself have your life back. Modern medicine is a wonderful thing. We get to live longer, less painful lives. It is beautiful. Conquer the enemy you have now.
The bios changed my life. It was an amazing process. It took about 4-6 weeks to see the full effects from enbrel. The bios have fewer side effects and don’t appear to be as dangerous as some of the others sound. I was fortunate that my doc put me right on enbrel and some NSAIDs for pain. Just mild NSAIDs to get me through the couple weeks it would take for the meds to kick in. I was recently switched to remicade for various reasons but I still feel pretty good. Before bios they did a BUNCH of blood tests and a couple chest X-rays. The test took almost a month to complete before they could start the bios, after that everything was good.
worrysport85 said:
Hey Amber, thank you for the reply!
May i ask how the biologics are working for you? are the a big help? Did your doctor have you start on anything else before moving to the biologics?
Hi and welcome, I think your Dr has the right idea, if you are showing signs of bone erosion already at 27 then treating your PsA aggressively is, in my opinion, the wisest course of action. As has been said before …do some research so you can make an informed decision about what you want to do. The more you learn about the whole subject of PsA, the more you can take control of your life. Its frightening to be faced with this condition, let alone the drug issues that go along with it.
Don’t be afraid to explore your feelings about it too, if you can. I’ve talked myself through the bad times by getting to the root of why I’m feeling frightened, confused, angry, tearful, and its helped me accept my condition and get on with it. I’ll always keep fighting and enjoy getting ‘one over PsA’ by finding new ways round a problem.
Good luck with your decision
im 24 so i get where you are coming from and it is scary to think about it but the medications can and probably will help you feel better. I felt the same way you do but do not regret taking sulfasalazine and methotrexate. I am still not on the biologics. Sulfasalazine and methotrexate have made me feel a lot better, granted not completely better or even close, but they have helped some. Keep in mind that not everyone will have all of the horrible side effects listed. I havent had any horrible or dangerous ones. Also, your dr. is not (should not) just give you the meds and never see you again. You will still be monitored for their effects and if something comes up you can get help. the alternative of not having treatment is a lot scarier than the medications especially if you are already showing joint damage. you are not alone along the process. for starters, eveyone here can help you along the way with concerns or questions. please consider the medications.
Hello and welcome to the group! You came to the right place! I joined last week because I too am recently diagnosed. My skin has been a huge issue for me for almost 5 years now so I am glad to hear that you have that issue under control. I also am young at only 22 and I understand all of your fears. It is scary and the medicine isn’t any less scary than the disease in my opinion. But being so young and knowing we will have this forever, I really just found that the best way to cope is just to find a way to be “okay” with it all. To just accept it and realize that you can still have an amazing life. You might have more obstacles than others your age but it doesn’t have to take over. I would definitely get on medication ASAP though
Hi. I'm new to the group, too. I know what you mean about fearing the drugs. I simply could not endure the methotrexate, and frankly, I am glad - it is really very bad for you in the long run. However, I, too, had to take it in order to get to the biologics stage. I believe that your doctor is saying that in effect, you just have to wade through the nasty bits with methotrexate, etc., and then you should be on track to use the better and less toxic biologics. It seems sound to me. In my case, I never seem to have enough of something or other in my blood tests to actually allow me to take these new biologic drugs ( I am in Australia, and the government subsidises drugs if you meet criteria, and I can't afford the drugs personally and I have blood results that don't meet the flipping criteria!), so I am stuck in a sort of limbo. Lucky you don't have too much in the way of skin lesions. Small blessings, eh? Here's hoping it all goes well for you!
In reply to Mr Crunchy (sorry, my phone only lets me relply to threads, not people), people have been known to get a Rule 3, then pop in to get bloods done the day after a major infection / cold / flu has started. I haven’t tried it, but it’s certainly an interesting thought in your situation…
Hey everyone, i just wanted to say thank you for taking time to help me out. It means a lot. Im lucky to have a supportive family and girlfriend but talking with people who are going through the same thing i am really does make a difference. There is a great group of people here!
I still haven't started my sulfasalazine, but i think im just about ready to do it. I guess i just needed a few days to wrap my head around everything. Also in my case i guess the good news is my doc says he wants to move me on the biologics as soon as possible and will be very strict with what counts as a "fail" on sulfa and mtx. He said if i dont show a huge improvement on sulfa in 2 months he will move me to mtx, and if i dont show a huge improvement on that in a 2 months he will move me on to the bios. So hopefully i wont have to be on these first two for long.
