Hi
I’m at Univ of Mich Rhuematology department. A little/lot nervous. Nervous that they will want me to take some terrible medicine and/or worried they will tell me it’s mild and don’t worry about it.
I’ll report in later, IF they tell me anything. May not know anything until I get back to my primary doc.
Good luck with this. Hopefully this will get you proper treatment, but remember that it takes time for any treatment to make a difference. Even if it is "mild", you still will likely require some treatment, to avoid joint damage.
I'm in the same boat tomorrow for the hand surgeon. Hoping he agrees to fix my hand, while at the same time not wanting to go through surgery. The only difference for me is that I'll walk out with a decision made.
Keep us posted, if you get any information today.
Hope you have a great appointment Cheryl.
Yup, they likely will want to start you on some meds. But awful is relative. You are probably not old enough to remember awful..... Thats when they didn't flavor things. If you were lucky your folks might give you a stick of gum after taking kaopectate for an upset stomach. And castor oil used for everything.... its been 50 years and I still have remnants of the taste.
I love my meds - all of them. NONE have has many, as likely, or more serious side effects than the OTC stuff most of us use/used to "help" Just don't read to much into what you read on the internet.
I recently had a bout with kidney stones. A couple of the big ones they remove surgically but put a stint in to make any left overs would pass easily. Now aside for the string hanging out which kept getting tangled in my underwear there was no problems UNTIL I Discovered the Doc want $235.00 to remove it.
I did what any tight wad would do, i went to the internet to learn how to remove it myself. (BTW youtube blocks the videos of doing it) I found some amazing things. There were entire forums dedicated to folks complaining about life long side effects from stints and pages of why not to use them. Never have I seen such whining (unless it was on a PsA site where someone was complaining about how they hurt so bad they couldn't work move or get of bed, but worse than that subQ shot of meds hurt SOOOOO bad. and lasted for days and they just couldn't take it sheesh)
Anyway I yanked the thing (the stint) out (note to self go slow next time, they are much longer than the pictures) nailed it to my shop wall with a water bottle to remind me to keep drinking and life went on.
If the benefits of these drugs DID NOT exceed the risks, they simply would NOT be on the market. The docs do not get commision or kick backs from the pharmaceutical companies EVER (most places they can't even get lunch these days) as its illegal. There is no more benefit to him tho prescribe a 800.00/dose bio than a four dollar generic from walmart. Keep in mind Drug companies only a profit on what Works (they hate law suits) The docs can go out of business for poor customer service as easily as an appliance repairman. (and now that MOST docs are employees its even more important for them to be "good"
Cheryl, I'm on my 4th week of 7.5 mg/wk of methotrexate. To manage potential side effects, I also take 1 mg/day of folic acid. So far the side effects have been minimal. My rheumatologist increased the dose to 15 mg/wk, and I am actually looking forward to seeing if the increased dose makes a difference.
I think many of us experience that apprehension in the beginning when the symptoms are pronounced enough to seek medical attention but at the same time we aren't sure in our minds if the benefits of treatment outweigh the risks. Once you start doing the research you will find that PsA is a systemic disease and can involve a number of body structures, including the cardiovascular system, and that early and aggressive treatment is key in controlling the disease process.
Lamb, I think the only difference between your bargain priced procedure and the $235 version is that they insert a scope and an instrument to grab the string a little closer to the stent. Other than that, the rest of the process is pretty much the same, although you are probably the first to nail it to your shop wall.
I think it's great that you have an appointment at the U of M. I really hope they can help. It's worth a try right ?
I'm sure it will go well and they will be helpful. I know it's scary, I get nervous at my doc, more about whether the treatment is enough to prevent more permanent damage.
Good Luck !
Well, here’s the update:
The new Rhuemy was very nice and I would love to see her again bc I got “white coat syndrome” and didn’t ask enough questions. The 4 hr drive to see her is definitely not something I want nor can do on a regular basis though.
She recommended that I start methotrexate. When I voiced my fears about this drug she said to think about, She said, “you could wait 6 months if you wanted to”. I appreciated the feeling of it being my choice, and also wonder why I would take it at all if I can wait 6 months to decide. My last experience with nausea and stomach cramping with Sulfalazane (sp?) didn’t feel worth it,
It’s warm weather now, so i feel better and am getting more exercise. It dropped to 62 degrees the other day and every one of my joints hurt. So 6 months from now I may be thinking,“give me the medicine!” However, I’ve read that it can take up to 3 months to relieve symptoms. So maybe I don’t want to wait until then.
I have never had a flare that caused immediate joint damage as some people seem to describe on this forum. I have been told that my disease is “mild”. I also read that if my SED rate is low (i.e., low inflammation) then the rate of joint damage would be low/slow.
I am not sure that I am one of those cases where immediate treatment is needed. When I asked my new Rhuemy if she could predict how my disease will progress, she basically said “No”. She suggests treatments based on symptoms how I am feeling.
Nothing about this disease seems to be straight forward or simple…
It sounds like you were right on both counts. . . She told you to take a "horrible" medicine, and that your disease is mild! Here's the thing. She suggested treatment based on symptoms and how you are feeling. But damage doesn't always line up with symptoms. The rapid joint destruction that you are talking about for some has likely been going on for some time, and the disease will effect each one of us differently. So for example, I don't have tons of bone damage, but apparently have a good bit of ligament damage.
You already know that it takes time for the medication to work. I'm glad that you were able to see someone you were comfortable with. Keep in mind that not all medications will work well for everyone, but as you already found out, you need to give it a solid trial.
Oh, and in terms of SED rate, not everyone's will reflect their inflammation. Mine has never been out of the normal range. Yet the disease continues to march on. Joints need to be looked at and checked for inflammation.
Thanks Stoney!
"Six months" is a rheumy word (s).. Its seems everything they do in blocks of 6 months. "Try this for six months" "come back in six months" etc etc. sometimes they change and its six weeks. But almost always its six months. Its hard to know what she meant by mild. Depending on the protocol of where shes working that could mean several things. USUALLY it means I can only feel inflammation in FIVE or so joints (thats the minimum for Dx) When you come back in six months after the NSAID treatment etc she'll count again. might still be mild or she may count seven joints and really turn up the heat to start the meds. It appears to me she doesn't believe the count will go down. There is so much to wrap one mind around six months isn't enough. Use the time wisley. Were it me I'd get the treatment started. It really helps to start treatment to get. the rest going (family partners co workers YOU) Especially if you start to feel better and realize there is hope. Remember that six months thing? If the first course of meds isn't quite right it will be another six months to get there. Now its a year. Only know how you feel and whether you want to feel the way you do or worse for a year.