Downhill Quickly

General
1

I'm sorry for not posting more. My fingers are killing me, as is almost every joint in my body. I've been off PsA meds for over a month now and can barely walk, am having trouble with my hands, and am completely exhausted. I'm planning to spend the day in bed as much as possible tomorrow, and will try to catch up then. I'm reading most posts, but haven't had the energy or clarity of thought to reply to more than one or two at a time. I see my gastro on Friday, and hopefully will be moving forward with diagnosis of liver problems and hopefully figuring out if/how we can treat my PsA.

Has anyone else gone off PsA meds and gotten much worse within weeks? I seem worse than before i went on meds, and it's scaring the heck out of me!

2

I am so sorry Nym for your struggles. I hope and pray you get find some sort of resolution soon so that you can feel better. Please take care of yourself. We miss you.

3

You are right. While I am medicated, the pain is there but it's manageable. When the med is gone, the fury of the condition soars through my body. I guess we do not feel how advance the PsA is until we are off the med. When my body suggests rest, I comply before I crash.

Heat/Ice helps with the hands. I also use Voltaren gel. (but with a compromised liver you cannot use this gel)

Let us know about your appointment with the gastro. We'll be rooting for you. There is no mountain we cannot conquer.

4

Sorry NYM!!! I have been off meds for four years now. I made the choice on my own as I was diagnosed with Hep C as well. The decision for me was keep my liver as healthy as possible or save my joints at the time. I once was in a wheel chair and unable to step up a curb or hold a fork without dropping it. That was years back. Today off meds I have good days and bad days. Rest and sleep are best. Oh and trying to avoid stress. My joints are being affected one by one and it doesn’t take long… My hands and fingers just started being affected this year. my spine, hips, neck, feet, ankles, toes, elbows, wrists, eyes, knees are all affected now. Oh I also have gastric ulcers from meds and bad reflux. I wish you luck and you are in my prayers!

5

That is soooo true for me. I was on methotrexate which made my bad liver worse. Stopped that and went on Plaquenil and it help a little, but then started affecting my eye sight. Now off everything and waiting for the insurance company to decide if I can take Humira and I am worse than I have ever been. The pain is so unbearable that I asked my doctor for pain pills (which I hate taking) to get me through until I can start the Humira. I never wanted to take any of the biologics because of the side effects, but I am so bad I will try anything if it brings some relief.

I'm so sorry to hear this from you Nym. You were so nice to me when I joined this group. You'll be added to my prayers. Best of luck to you.

6

So sorry to hear things are so bad for you, wish I could give you a hug, thinking of you…all you can do is rest X

7

Thanks everyone. I'm attempting to rest as much as possible with five homeschooled kids. At least I don't have to get up early in the mornings to get them ready for and off to school! LOL My pain med is barely touching the pain. I'm going to call my rheumy today and ask if there are any other options for pain. If the pain would let up a bit, I feel like I could cope better.

8

Nym I am so sorry you are suffering so much. I was off Humira for 6 weeks due to complications of infection. Within less than one week of missing my first shot of Humira I was having joint issues. By weeks 6 I was certainly in the same shape you are. I was shocked at how fast I deteriorated. I do think we forget how bad we are when off meds. I did stay on my MTX . I did not and do not have any liver complications.

All I can offer you for advise is to take whatever pain meds are available to you. Rest, use hot packs, cold packs and do gentle excercise say for 5 minutes out of every hour. Even rolling your ankles and wrists around is good.

good luck IT WILL GET BETTER really.:).

9

Hi Nym I decided on my own to stop taking methotrexate over a year ago after a complete change of diet,I no longer see a rheumy and havent been to a doctor in ages. when first diagnosed I was in so much pain it was agonising and some mornings Id have to crawl out of bed. I still get sore joints but only when I eat or drink something I shouldnt the best thing I think was giving up all grain, sugar and processed food now pretty much if it doesnt come out of my garden I dont eat it. Ginger and tumeric tea is wonderful xo

10

Cloves have a property that is used by dentists to numb the mouth. I use it whenever I cannot handle pain in specialty teas and dishes. I keep in mind that everything in excess is bad, so I use this tip sparingly.

Belinda said:

Hi Nym I decided on my own to stop taking methotrexate over a year ago after a complete change of diet,I no longer see a rheumy and havent been to a doctor in ages. when first diagnosed I was in so much pain it was agonising and some mornings Id have to crawl out of bed. I still get sore joints but only when I eat or drink something I shouldnt the best thing I think was giving up all grain, sugar and processed food now pretty much if it doesnt come out of my garden I dont eat it. Ginger and tumeric tea is wonderful xo

11

Oh Nym, so sorry to hear about your struggles-you are very much missed! Good luck with the doctor & hang in there!

12

Just a thought Nym, but seeing as you are miserable anyway....

Why not dodge the diet? You have been pretty darn faithful to it....

Eat something you have been hankering. Maybe Egg plant parmigiana BIG chocolate Brownie with a hot fudge sundae on top, or maybe a great big slice of hot homemade sour dough bread with fresh creamery butter, spaghetti with tomato sauce ????? I mean what do you have to loose??? Beer??? Go for IT

Praying for you and hoping fort a good liver report....

13

Sorry Nym. Prayers and hugs to you. Your situatoin is is my biggest fear now that I'm on Enbrel and it seems to be working. I know it stops working for some, and for others, they need to stop it for health reasons such as yours. That stinks! My sympathies. BTW, I say go for the brownie idea, just do keep it GF so your celiac does not act up.

14

Thanks, lab, but I have celiac. I can't eat gluten. I'd be more miserable than I am now - I don't need gastrointestinal ills and cramps so bad I'm doubled over on top of everything else. I've been seriously thinking of begging my husband to make one of his fabulous gluten-free cheesecakes, however, for a weekend of "testing" this dairy-free thing. ;)

As far as diet goes (sorry, can't remember who mentioned diet) - I'm gluten-free, dairy-free, processed food-free. I rarely eat nightshades. I eat mostly organic / grass fed / free range / you get the picture. Unfortunately, it doesn't touch my overly-aggressive PsA/spondylitis.

Mimi ... I'm off meds because my rheumy thinks I have autoimmune hepatitis from taking Remicade. I see my gastro tomorrow to see what she thinks and perhaps get further testing...and see what she says about taking biologics if I do have autoimmune hep. My liver enzymes were higher than their normal high, so there's a big concern. (I do not take mtx due to simple fatty liver / high liver enzyme levels.)

The prayers and good thoughts/energy are greatly appreciated.

All things considered, I'm not doing bad mentally/emotionally. Life is still good even when my body isn't cooperating. :) I have a lot to be thankful for - for example, today I'm thankful for being ambidextrous, as I can't lift my right arm at all. LOL Life with PsA - never a dull moment!

15

I am new member. I do not know any of you. I am also a member in inspire.

Nym, sorry to hear about your pain.

As Belinda and Gelita said, I am managing by being away from grains and sugar. It is working to its best. There is till slight pain in the remote depth. It is well manageable. But I do not know how will be my PsA's effect on my joints/body in the long run if I keep on managing myself without medications. Pain may be an indicator of its effect. However, I feel remote but well manageable pain even without grains and sugar. It could be due to my brown rice intake (the only grain that I take).

Recently, a month ago, for a week or so, I ended up taking regular grainy food, etc. During that time, I had pain a lot. I took blood test. Cholestrol total 170 (normal 125 - 200), HDL 21 (35 - 80), Triglycerides 103.4 (25 - 200), LDL 129.22 (85-130), VLDL 20.68 (5-40), High Sens. C-Reactive Protein 0.23 mg/dl (0.07-0.11 Low risk, 0.12-0.19 Moderate risk, 0.20-0.38 High risk). 3 years before, my LDL was 124. HDL was the same.

I wondered why my cholestrol level was higher. I heard, cholestrol is needed to manage inflammation. Also I saw lots of research papers published across the years linking Psoriasis (Arthritis), high LDL level and inflammation, etc. At least, I am not in a strange thing.

It is very consoling to hear some saying they could get back from disabled situations.

Nym, my best wishes to your PsA management and healing path.

When you go to Gastro checkup, will it be a overall checkup or somethings specific?

Do you think, liver is not functioning well?

One of my naturopaths claimed, likeness to taste soil, sand, chalk, etc when we were kids is a strong indicator of liver problems. Well, when I was a kid, I liked to taste soil, sand, chalk, etc.

Please update me and thanks

16

Sorry to hear. I will be praying for you. Somewhere I have heard others speak that when they come off their meds, that they feel worse than before they were on them. I hope this helps. Rest up and take it easy. Nobody bud people with PsA know that this disease is exhausting and painful. God bless!

17

Sorry to hear you are struggling but hang in there!! I have gone off of my meds before (mtx, sulfasalazine) and I did feel much worse. I was dealing with an infection and didnt want to weaken my immune system even more. I did feel a lot worse than before I started the meds but I think that is probably because the PsA itself has progressed with time. I am back on the meds and feel like it is taking longer to feel the relief & improvement this time around.

18

I am very sorry to hear this nym. This was not something you needed to add to your life, but I know you are strong and will pull through this. I know how dedicated you are to your family.

I went through a few years of having a sick liver resulting from a dead gall bladder. My Chiropractor sent me for a liver cleansing kit and milk thistle at the health food store. It did the trick. I don't think the AMA currently has anything to compare to this. There is something in the thistle very healing to the liver, and surely it can be obtained online. I am not a Doctor, but you may want to ask the question, I know that my GP is very open to some of this thinking.

My good wishes and prayers are with you and your family for your health.

Hugs,

SK

19

A couple of weeks ago I went to a very good liver specialist and I told him I was taking milk thistle, and my liver enzymes appeared to have been lowering, since they were high. The doctor and his student (teaching clinic) abruptly and amphatically said to stop the milk thistle immediately. They said that it does not help, it only alters the test results.

SK said:

I am very sorry to hear this nym. This was not something you needed to add to your life, but I know you are strong and will pull through this. I know how dedicated you are to your family.

I went through a few years of having a sick liver resulting from a dead gall bladder. My Chiropractor sent me for a liver cleansing kit and milk thistle at the health food store. It did the trick. I don't think the AMA currently has anything to compare to this. There is something in the thistle very healing to the liver, and surely it can be obtained online. I am not a Doctor, but you may want to ask the question, I know that my GP is very open to some of this thinking.

My good wishes and prayers are with you and your family for your health.

Hugs,

SK

20

I hope you feel better NYM. My thoughts are with you!