Update. | Arthritis Information

 

Hi guys, I hope you are interested and not fed up with my ramblings!

I saw my GP yesterday, my ALT tests had doubled to 69, my blood pressure was still not good, 158/85, (I am on bl pressure meds already), my joints are all inflamed and my ESR is creeping up again.  My GP said, it is imperative now that I lose weight, but I am trying my best and can't seem to shift much, I have walked every day!  I am going to hire an exercise bike and do as she says, 5 mins whenever I can manage it.

She feels that my rheumy will stop my MTX when I see him next week, for now she dropped it further to 10mg a week, from 12.5mg last week, and 15mg the week before.

Any ideas for me on what I can do, I have absolutely worn out my options except rituximab, (RD is sure I will react as I react to everything, and is worried as its intravenous).  I can't take antiinflammatories anymore, so I am stuck I think on the dreaded old Pred (8 years and counting) and my RD says I am a time bomb waiting to go off!!!!!!!  I have so many co-morbidities now most from pred it has become a real risky proposition for my general health which is truly suffering.

RA, Osteoarthritis, osteoporosis, DDD, Facet joint inflammation in spine, Cushings syndrome, Glaucoma, high cholesterol, high blood pressure, episcleritis in eyes, sjrojens syndrome, obesity, depression, anxiety, peripheral neuropathy, pre-diabetes, I could go on and on, and when they tell me all this I get so deflated when I am trying to be optimistic, I just don't know how to help myself anymore.

Come on guys I need ideas.  For now I will keep walking, dieting and praying.  Love Janie.
That's a lot to deal with, for sure. Maybe give AP a try if you haven't already? It's helped a lot of tough cases! I hope you find something soon.PS....marijuana is very helpful for both glaucoma and high blood pressure.I keep wanting to ask my RD if that's an acceptable alternative to not drinking alcohol...Janie, have you taken any supplements to help the liver...there's milk thistle and SAM-e (although one study showed a possible connection with SAM-e interfering with mtx)?  I'm forgetting now...have you been on Imuran or Arava instead of mtx?  I know there's a lot going on, but hopefully they can figure something out.Is the cushings a result of the 8 years of pred? Or did that come first?

I can't believe the allow you to stay on pred with that! It's such a time bomb!! :( I would honestly be looking at alternative treatments for the cushings and BP/cholesterol. Somehow I have a feeling that with those tamed, everything else would be easier to treat.
I agree with Katie.  Cushing's can be causing so much of what else is going on, and it can come from the pred. 

"Affected people are more susceptible to infection and may suffer from stomach or duodenal ulcers. Mental changes often occur, including depression, paranoia and sometimes euphoria. Insomnia may be a problem. Patients may develop hypertension and edema. About one-fifth of all patients develop diabetes mellitus"

(from : http://www.healthscout.com/ency/68/81/main.html )


Yeah.......what are they doing to treat you for the cushings right now?
Okay so, if your cushings isn't caused by a tumor or cyst, etc, its caused by the pred. So the only way to take care of that...............would be to get off the pred :(

BUT, if you did that, it seems (from reading up on cushings) You'd have your BP drop, your blood sugar level out, etc etc. So by dropping that one pill, you'd lose a lot of your dx-es and symptoms.

The downside, is that this would send you back into a flare. Perhaps AP is something for you to try??



All of these meds you've failed, did you fail them AFTER the cushings DX? I'm wondering if you could drop the pred, hold off until your body levels back out, and then re-try some of the meds? Perhaps without your body "fighting" the cushings, you'd respond better to the treatments???

I'm just throwing out some ideas here!
Thanks again guys, the cushings is a result of the pred, we have tried to get me off of pred for 8 years and I am bedridden usually below 10mg, I have tried every option including Arava, MTX, Imuran, Azathioprine, AP THERAPY, sulfasalazine, plaquenil, Enbrel, Humira and Orencia, I am either unable to tolerate or allergic to them.  The only option left at this stage is Rituximab, but RD is worried about going there due to infusion and allergy possibilities.

I take probiotics.  As for what they are doing for my cushings, they are just treating the RA and trying constantly to lower the pred???  As i have said, I don't know which way to turn.  I shall ask my GP about milk thistle as she is a great advocate for alternatives.  I forgot to mention, I also have GERD and insomnia.  Take me out the back and shoot me!!!!!!  ha ha.  Much appreciation, Janie.
GERD and insomnia can ALSO be chalked up to the cushings/pred. Oh i am so sorry. Still you have been doing a great job. Keep trying the walking. Have you concidered surgery for the wieght? If you continue the walking the results should start showing soon. We are praying for you. This is so discouraging an appiontment after all of your hard work. I am sure we can fix this. Please keep walking. I am hopeful that this mask will help with the bloodpressure soon also. Please let us know how things are going. I am in no way sick of hearing. I am very intested in your health and well being and i want you to keep checking in and letting us know how you are doing. We are here to try to help.Hi Katie, thanks for the advice.  I have tried to wean myself off of the pred but it is impossible, I get so bad and refuse to take it so they put me into hospital and what do they give me, massive doses of methyprednisolone to get me mobile again, talk about between a rock and a hard place.

The problems I had with all the dmards are as follows.

MTX - mouth ulcers, scalp lesions, hair loss, chest infections, constant diarrhoea, now ALT raising.

Arava - Gastro 24 hours a day, could never go anywhere or make any plans, always had to be near a toilet.  Peripheral neuropathy.

Gold injections - passed out with second injection, had a vaso-dilatory reaction and thunderous headaches.  Was not allowed anymore.

Imuran - Violent vomitting, and diarrheoa, so bad an ambulance had to be called, I was put on a drip as I was badly dehydrated, and was not allowed to take it again.

Humira, Enbrel and Orencia, anaphylactic reactions, mouth and lips swelled, rash, tightening of the throat, none of the companies would give me any further prescriptions for their drugs.

Any ideas, I feel like just coming off of the pred, I agree it is slowly killing me, but they will just put me into hospital again and give it to me intravenously!!!!!!  AAAAArrrrgggghhhh.
Hugs from Janie. Oh Jane, what a nightmare for you but I have the same problem with regards to meds, My doc said I have a low or nil tolerence and I had the same thing happen to me with gold injections. I had major upper respiratory infections on the Humira and the enbrel made me swell all over and a mad rash appeared.Even gabapentin gave me hallucinations. Urgh!!! :(

You know you're about at the point where I'd be reaching for OTHER medications. Like things they give people with OTHER inflammatory diseases. What have you got to lose at this point? Since so many of the meds for Chrons were once RA meds, I wonder how your doctor would feel about trying Chrons meds? After all, some of them are gentle on the stomach (its chrons after all...lol) but I know they've probably never been tested on RA patients. Or at least, not at a great enough volume. I'm really reaching here I know, but like I said, what have you got to lose??

Pentasa is an ant inflammatory, maybe see what he thinks about that?

And 6MP is/was a cancer drug that, like MTX, was found to slow the disease process. WAY WAY nicer on your liver, and doesn't upset the tum. The real pill name is mercaptopurine.

That's all I got for tonight, cause I shouldn't even be up. I got sick at work and came home and passed out. Now it's 4am and for some reason I'm wired. LoL I'm gonna putter around and find some more stuff tomorrow!! *hugs*

We GOTTA get you off this pred!!!
What about Celebrex? i do feel bad for you, does vicodin/ oxycodone work any??Tried celebrex did nothing for me.  Can't take antiinflammatories anymore, it has eroded my oesophagus and now I can't absorb iron anymore, it was practically nil stores in my bone marrow, it wasn't the same as chroinc illness iron deficiency, this is different and I am major fatigued.  Even the suppository type ones cause gut problems!!!!!So now I have to have intravenous infusions of iron when the bone marrow markers go down.  Trouble is I had been on them for years due to severe back problems, and had a lumbar laminectomy in 1999.  So I think oesophagus was already damaged by the time I got RA.  I will ask my doc about the other meds though, thankyou very much Dr Katie.  Hugs Janie.XX  Thankyou for caring.  Now make sure you get some rest!!!!!! I'm tryin babe!!! :( You've been on my brain all night and all day. I refuse to think there's no option for you :( [QUOTE=janiefx]

AP therapy - stayed on this for 3 years with terrible diarrhoea, and became poisoned by the penicillin,
[/QUOTE] Hi whispered, I have tried ap- initially I went to hosp for 3 weeks to initiate the treatment, that is when they gave me the penicillin for some unknown reason, but then I was put on minocycline, and tried that for 3 years and didn't notice any difference I am afraid to say.  I am on Endone and I have tried Oxycontin but have allergies to that.  The Endone does help but with all the drugs in the mix, my GP is concerned about seretonin syndrome.  I take 5mg of Endone 4 hrly but usually it takes 10mg to make a difference.  But she ays this is too risky!!!!  I will keep trying, and appreciate all of your input, thanks everyone, Janie.  PS I am going to RD on Wednesday and I am going to ask him if I can come off the pred, go to a private hosp and refuse treatment with methylprednisolone, and see what they come up with.  I am also going to a new pain clinic on !st May.

Suzanne, I have a endoscopy and colonoscopy every 12 months and their is no sign of Crohns.  Just probs with my oesophagus.  But thanks anyhow.

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