Author Topic: how is this possible?  (Read 2875 times)

jessiblah

  • Guest
how is this possible?
« on: May 31, 2013, 02:44:07 PM »
How is it possible that i can have a flare when I am on all of these meds? I am exhausted, my joints hurt, i have major brain fog right now. I am on methotrexate 7.5mg weekly(been on for 1 month), pred 5mg twice a day(been on for 1 month), plaquenil 200mg twice daily(been on for 6 months), folic acid 5mg twice daily(been on for 3 months), vit d 1000u once daily(been on for 6 months), lyrica 50mg three times a day(been on this dosage for 1 month).

 I felt the same way without all of these darn meds. This horrible kidney area pain keeps coming back too. I am so done with these crazy vivid dreams, i want to come off the pred now. I keep getting unexplainable bruises as well.

Being on all of these meds is not really helping. I am thinking I am going to tell my dr that I am going to stop one drug at a time. Starting with coming off the pred which I am sure will take a year because of the tapering dosage to come off. By that time I am sure I will be able to tell if the plaquenil and methotrexate are helping.

Are there any vitamins that anyone has noticed helps them out. My dr wasn't too sure about me taking coq10 and i can not remember why. I can not take a multivitamin as i vomit from it.

Any suggestions are appreciated!

Carolina

  • Hero Member
  • *****
  • Posts: 5817
  • —if it ain't one thing, it's another." Roseanne R.
Re: how is this possible?
« Reply #1 on: May 31, 2013, 03:24:10 PM »
Well, I don't know.

You can't just stop taking those things, that I know for sure.

I think flares are always still possible.

Did it get worse when you added the Methotrexate?

(I know, it's almost impossible to know what got worse/better/stayed the same when I'm asked that question....so much is always going on, and so many variables are involved).

10 mg of prednisone a day isn't all that much, I mean it's important, but I think it would be possible to taper faster.  You started that with the Methotrexate, riight.

I haven't followed your history, I'm sorry.

I don't know why you are having each medication.

In my opinion, and I'm not a doctor or any sort of trained medical person, but I would think that only a severe vitamin deficiency would be addressed at this point by supplements.

And a good doctor should have found that problem by now.

Honestly, I don't think that most of us can truly address the problem of AI/ID conditions with supplements. 

I know many will disagree, but to treat Lupus or RA with supplements and herbs would be folly, IMHO.

Sjogren's?  It depends on the severity of the condition, and speed of progress, the organs involved.  I've never used anything but Salagen and Restasis to directly address my Sjogren's Symptoms.  Otherwise anti inflammatories, and Cymbalta.  Never the heavy hitters that you are taking.

But I now have been diagnosed with an Immune Deficiency and all the vitamins and supplements in the world will not add one immune factor to my body.

I know you're stressing, Jessi.  I wish I had suggestions.  You're doing all you can.  Talk to your doctor. 

I'm sure others will have much better responses for you.

I'm in the midst of a flare myself, and crabby. I mean to be helpful and kind.  I often miss the mark completely.

Keep us posted.

Hugs, Elaine




Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Omega 3-Naltrexone-Esomeprazol

lori

  • Hero Member
  • *****
  • Posts: 754
Re: how is this possible?
« Reply #2 on: May 31, 2013, 03:39:22 PM »
7.5 mtx is not much at all- im on mtx for the ra in addition to sjs- i take between 15-20  mg perweek!!

I would think the goal is to raise the mtx and get you off pred- pred is a great med for hitting acute stuff but it is one of the most dangersous meds out there today for long term use...

when i was first dx with sjs i didnt have the mtx or humira on board- after the RA dx came along i got agressive treatment and feel better than i have in a long time-

not sayingyou have RA but it takes a while soemtimes to balance the meds and see wahts causing what.

best wishes to you

lori

Skylar

  • Guest
Re: how is this possible?
« Reply #3 on: May 31, 2013, 03:42:06 PM »
Sjogren's sucks.

I was in a similar low spot where you are now when I read a book that changed my life and my diet (The China Study by Dr. T. Colin Campbell). OMG - diet and nutrition plays a huge role in our health. I was desperate when I started on the diet (Dr. John McDougall) and was just hoping it would help a little bit. Instead I discovered that it put all kinds of health issues into remission.

I'm very passionate and continue to post about this because I know it can change the health of everyone here - it's not a cure, not everything will become normal, but many problems will go into remission and others will be milder.

Dr. John McDougalls diet is available free on his website and he has a great forum to help implement it. You only need to do it for about 2 weeks to see how it works for you - just 2 weeks - but you can't be cheating during those two weeks because you want to see the full effects.

As for vitamins - if you have blood work to show that you are low or deficient then you should take them ..... but there is a wealth of research showing that taking most vitamins in excess actually can be detrimental. Of course the vitamin/supplement industry doesn't tell you this - but the medical literature is rife with peer reviewed journal articles. The beauty of Dr. McDougall's diet is that just eating a healthy diet means you will meet or exceed all the USDA's requirements for vitamins and minerals.

Plus this diet will be easier on your kidneys compared to the Standard American Diet.
I can't stop urging people to give this diet a try - it will make you feel better.

LadyDi

  • Full Member
  • ***
  • Posts: 242
Re: how is this possible?
« Reply #4 on: May 31, 2013, 05:08:04 PM »
Anything is possible with Sjogrens. I am on some of the milder medications (Plaquenil, Evoxac Restasis, tumeric and fish oil) and I still have flares.

The is no "one size fits all" for medications and supplements and certainly no cure for this flippen disease!

I find that it is best if I get enough rest, eat well and try to keep stress levels down. But life is life and life is stress! If I flipped out and got all angry at my doctors and my meds then I would most likely start a flare, or make an existing flare worse.

Please try to keep a positive attitude. I could complain about a gazillion things that are bad and going on in my life right now, but it would do me no good. Keeping calm helps the meds and the supplements prevent and or reduce the flares.


Primary Sjogrens, fibromyalgia,partial thyroidectomy/hypothyroid, asthma, chronic sinusitis/nasal polyps, environmental allergies. Plaquenil, Evoxac,Restasis,Neutrasal, levothyroxine, Zyrtec, Singulair, Proair inhaler, spironolactone

SjoGirl

  • Hero Member
  • *****
  • Posts: 2145
Re: how is this possible?
« Reply #5 on: May 31, 2013, 06:00:29 PM »
Diet changes, stress reduction activities such as meditation, reading (my latest is Taking the Lead: Dancing with Chronic Illness all help).

Supplements help some, but my rhuemy told me recently that no food or supplement is going to cure SjS. What is happening is at a cellular level.

That could have freaked me out, but instead it solidified my thinking that I need to control what I can and let go of what I can't. The stress reduction alone from thinking something I could do (or that I wasn't doing) could cure me was a relief. I am now able to concentrate on doing all I can to feel my best.

Hang in there.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

jessiblah

  • Guest
Re: how is this possible?
« Reply #6 on: June 01, 2013, 05:32:32 AM »
Thank you all for your responses. I really don't think I am very stressed. I have been very good lately on keeping my stress levels down. My health is one of the only things that stresses me out. Yes my job is stressful but I have learned to let a lot of things go so I don't get crazy over it. I used to be a 10 with stress all of the time but I have dwindled it down to a 4.

After I wrote the original post yesterday, I became very dizzy/lightheaded and almost fainted a few times. I had to take a lot of antivert and still this morning I am slightly lightheaded with a full work day ahead of me.

I go to the rheumy on tuesday so hopefully I can start tapering the pred. I am sure she will increase the methotrexate as she discussed doing that before.

THE BRIT

  • Guest
Re: how is this possible?
« Reply #7 on: June 01, 2013, 06:29:00 PM »
  I agree about helping yourself.  My stress levels are at +10 right now due to various things but I have to try and let go of some of it as I am a terrible stress eater which also donesn't help.  Recently I started getting a lot more pains in my legs so I thought that as they were muscle spasms that maybe stretching the muscles might help.  I have been looking to go back to yoga for ages and joined a local one and e mailed the owner about which classes would be OK.  The yoga hasn't taken away the core pain which happens climbing up the stairs to the studio but did help the new pain go away.  I now go to 5 classes a week when I can and have found that has helped my joints and muscles and it has been good for my psychologically as I am gradually being able to do more and more so it has gotten me out of the why is my body doing this to me, my life is ruined.  It has also been nice for making new friends and I enjoy the spritual part of the classes and people have noticed a difference in my deamenour.

Ark mom

  • Hero Member
  • *****
  • Posts: 613
Re: how is this possible?
« Reply #8 on: June 01, 2013, 08:22:06 PM »
I am sorry that you aren't feeling well right now.  Hugs to you!

When I started taking methotrexate, I had to be on 20 mg of prednisone a day while I was increasing my methotrexate dose to 15 mg per week.  Finally, after about a month on 15 mg of methotrexate, I was able to taper down to less than 10mg of prednisone.

You are taking fairly low doses of both medications.  It may not be enough.  It wasn't for me.  Keep your doctor informed about how you feel.  It has taken me 1.5 years to begin finding medication that is helping me.  For the first few months of treatment, I was calling their office multiple times a month, desperate for help. 
41 yo with Sjogren's (sero-neg), FMS & sub-clinical Graves; Plaquenil, Evoxac, prednisone, Restasis, Cellcept, gabapentin, duloxetine

SjoGirl

  • Hero Member
  • *****
  • Posts: 2145
Re: how is this possible?
« Reply #9 on: June 02, 2013, 09:39:55 AM »
Jessiblah, sounds like you are doing all you can, hope your doc can help.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Styx

  • Guest
Re: how is this possible?
« Reply #10 on: June 03, 2013, 12:07:04 AM »
jessi, as others have said, you are barely taking anything at those doses, and only a few of those drugs are demonstrated and/or thought to be effective.

I'd recommend raising your MTX and Plaquenil dosage if you can.

Styx

finallyadx

  • Hero Member
  • *****
  • Posts: 1107
Re: how is this possible?
« Reply #11 on: June 07, 2013, 08:12:08 AM »
Hi Jessiblah - I think anything is possible, unfortunately with sjogrens.  I do not think anyone or any medication(s) can guarantee you will not have a flare while taking them.  I think they are meant to minimize a flare, the symptoms of or the possibility of having one, but there are no guarantees.  All AI's really stink!

The prednisone may be causing the excessive bruising, I know it did with me.  I often felt dizzy, lightheaded and simply "out of it" while taking the prednisone - it is not a medication I wish to go on again unless ABSOLUTELY NECESSARY!!!  When I was on the prednisone I often felt worse but was told by my rheumy that it should make a difference "in the end"...and I guess it may have.  He started me on the plaquenil at the same time thinking by the time I was done with the prednisone, possibly, the plaquenil may start to work. 

I believe some of these medications also take longer than a month to get the full effects - I know the plaquenil does for sure - looks like you have been on that for 6 months.  You may still not be feeling the full effects of it.

I am so sorry to  hear that you are having such difficulties, this is one of the hardest things about AI's - people feel really terrible at times.  If you are seriously thinking about going off your medications, a call to your dr(s) is definitely in order for them to help you ween off of them appropriately so that you do not send your body into an even worse "tail spin". 

I am sending positive thoughts and prayers your way and hope that you start to feel better soon.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc