The Good, The Bad, and The Ugly

Symptoms & Treatments
1

I am very sorry for having not hanging out or even haunting the board for quite some time.

We have all had that, “I am through dealing with this. Nothing is gonna fix me. I hate doctors, I double dog hate insurance drones who don’t know the difference between their butts and a hole in the ground. And I triple dog hate these stupid medicines that dangle hope just enough to go nah we’re kidding.”

So I have been gone. Abandoned all hope and wandered the cosmos.

Hi fellas, remember me? I’m back!

The Good. I have a Rheumy who has a brain now. And they care about the patient. I’m on Remicade. It seems to be doing a fairly solid job so far.

The Bad. It takes two days to recover from the infusion. I get one every 8 weeks but it stops working at week 6. Kinda like hitting a wall, stops.

The Ugly, the reason the post is here in this category. Symptoms:

First, PsA symptoms. My feet are trashed. Have been home to Athletes Foot and secondary yeast infection for decades. The skin is dry and cracked behind the swamp toes worse than any desert you will ever witness. No matter what I do the permanent stench from my feet is repulsive to pig farmers and paper mill workers.
All of my nails look like the surface of the moon and, of course, are host to fungus and thickening.
All my pit like areas, you know, are red and swollen.
Permanent dandruff.
Thankfully very little surface red spots or patches.

Second, symptoms of meds. Where to start? They are all combined just on this side of keeping me alive. They all have warnings that say if you experience this that or the other, contact your doctor right away. I couldn’t take anything if I followed those standards.
Trouble breathing, chest tightness, light-headed, dizziness, vision trouble, weakness, tingling, tremors, dry mouth, congestion, and on, and on.

The PsA symptoms are improving on the Remicade. Not sure what to make of that. Either it will stop working real soon or it will kill me quickest of all.

I’m always a glass kinda half - where’s the vodka? person.

Buh-bye for the moment.
I’ll be back.

1 Like
2

Hey! I’m sorry to hear you’re having such a tough time… I’m glad you found a good reumatologist though!

Are you sure all the skin and nail stuff aren’t pretty much all down to psoriasis?

Those directions for side effects confuse me too… Whenever I think I’ve got something bad they say aah well it’s no big deal… and then I think it’s something minor and they freak out and pull me from the drug…

2 Likes
3

Well, it sounds like the Remicade is starting to work. Maybe you’ll continue to have improvement. It would be nice if they could do an infusion every six weeks. There must be a product that can help your feet. That sounds awful! I suppose you’ve already tried everything imaginable. My feet have started perspiring lately, but I have something I spray in my shoes and it removes any odor.
I hope someone has some suggestions for you!

1 Like
4

I have had it with medications that seem to only cause side effects. I tried Otezla and among other side effects it made me badly depressed, and then I went off it for insurance reasons. I tried Stelara and it caused disfiguring and painful facial psoriasis, which I had never had it on my face before. I tried cortisone cream on the psoriasis, but it worked slowly, and I had so much rash covering my face and even inside my ears that I was using more cream than I thought was good for me. I have just started using aloe Vera gel instead of cortisone, and it is working! I put it on twice a day and after three days my red scaly patches are now barely visible. I am off the Stelara now because my insurance will not pay enough for it. Now my rheumatologist wants me to try Methotrexate, but I am through with taking these medications that disable part of my immune system. --Nancy

5

Methotrexate was bad for me and for everyone I have ever heard from. I guess there must be a bunch of people out there who just never need to complain who do wonderfully on the stuff, why else would they push it constantly on the entire populace?

6

Are there people out there who are on methothrexate and doing wonderfully? -Nancy

7

There are people who do wonderfully on MTX (not me, but I’m sure someone who does will mention it), but actually that’s the case for a much higher proportion in RA.

It’s really only been recent that science has understood that RA and PsA are different beast.

MTX has also been around a lot longer (meaning the docs know the potential long term side effects), and of course it is waaay cheaper than new medicines like the biologics.

8

I’ve always got on okay with Mtx. I don’t get unpleasant side effects from it and never have really, even at the highest dose. Raised liver enzymes for a while, but they returned to normal and a scan showed my liver was fine. It helped me loads when I took it on its own, just not enough. It never tackled my swollen joints though it appeared to lubricate them as well as countering fatigue to some extent - it got me back on my feet, quite literally.

Years ago I read a post by an elderly man on here (I hope that is how he would describe himself too!) I think he was in his late 80s … He’d been taking Mtx for some time and thought it was the biz! (Where are you now, you wonderful person? I hope you’re still going strong!)

There are plenty of people who don’t have problems with Mtx and it can help many of us for sure. Unfortunately you won’t know whether it helps you until you try it.

9

Hi there NancyJ, I’ve been on Mtx for over 18 months now (it was the first DMARD I was given)… while it hasn’t improved things out of sight, what I can say it certainly seems to have made a difference overall, especially to the fatigue… it took a while to get the minor side effects under control, but it was easy enough with increasing folic acid to 5mg 6 days a week (not on Mtx day), taking the Mtx late in the evening, and drinking heaps of water with it and the next day… my body mostly adjusted, it certainly cleared up the psoriasis (which was only mild-ish) too. If I wasn’t feeling any benefit from it I wouldn’t continue with it, although from what I have read Mtx can help with not developing antibodies to biologics, so I am reluctant to stop it, am hoping to be offered a biologic to try in the next couple of months when I see my rheumy next.

All the best with it!!!

1 Like