Author Topic: Lost hope  (Read 13992 times)

Sharon

  • Hero Member
  • *****
  • Posts: 1329
Re: Lost hope
« Reply #15 on: January 02, 2016, 11:05:10 AM »
Thanks so much Kathy,
This forum has indeed proved invaluable so far.
What dosage of Plaquenil do you take?
Aren't you concerned about the possible eye damage it can cause?
Evoxac is not available where I live,
but if it helped you that much I might try to go to lengths to attempt to import it.
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

bluegardenia

  • Hero Member
  • *****
  • Posts: 680
Re: Lost hope
« Reply #16 on: January 02, 2016, 11:31:36 AM »
sharon where are u from? europe?
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

Kathy57

  • Hero Member
  • *****
  • Posts: 778
  • Primum non nocere - "First do no Harm"
Re: Lost hope
« Reply #17 on: January 02, 2016, 11:52:29 AM »
Sharon,

I take 200 mg of Plaquenil twice per day for a total of 400mg.  I had to "build up to it" gradually and I take it with food.  I was so sick and miserable when I started and the people here walked me and talked me through it, day by day, and week by week. 

I felt the Plaquinil kick in at about three months (a terribly long time when you are miserable and without hope!). I felt better at 6 months and even better after a year.  No where near "cured" but so much better.  It gave me my life back by helping the fatigue and pain.  I have my eyes examined by an Opthamalogist annually (who is very familiar with Plaquinil and Sjogrens.).  I am willing to risk the eye damage for the help it gives. 

My eye doc keeps on top of everything and told me it would be unlikely that I would have eye damage but to call him immediately if I notice any vision changes.  I've decided that I will take it as long as it helps me.  I can always stop it if I have problems.  Life is a bit of a gamble and faith.

I would go for the generic Evoxac  because it is cheaper than brand name and I personally found no difference between the two.  I can't live without my Evoxac. I would definitely try to get some to at least try it out.  It was also at the advice of people here.  It lasts longer than the Pilicarpine and you can take it three times per day, depending on how much you need it.  (I take it three times per day)

Hang in there!

Kathy

« Last Edit: January 02, 2016, 12:00:27 PM by Kathy57 »
62 yr old female - Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

LucyD

  • Hero Member
  • *****
  • Posts: 592
Re: Lost hope
« Reply #18 on: January 02, 2016, 12:46:47 PM »
Sharon, please do not ever give up hope. They are making advances and researching. Also, our bodies and their innate Intelligence are amazing. I am sorry I have no suggestions, but I send hugs and love.
Dxs: Sjogren's - seronegative, UCTD, soft tissue joint pain, Hypothyroidism
Medications: Plaquenil 400 mg/day, Restasis, Synthroid, Cytomel, Celexa, Deplin (L-methylfolate) (for MTHFR genetic defect)
Age: 65

Sharon

  • Hero Member
  • *****
  • Posts: 1329
Re: Lost hope
« Reply #19 on: January 02, 2016, 12:57:51 PM »
Kathy- Thank you, I will try the Plaquenil again and build up gradually to try to save what is remaining of my salivary glands.
I'll also try to get hold of the Evoxac one way or another.
Sounds like these options are my best bet at present.

LucyD- Thanks for the kind words of encouragement and hugs. Means alot...
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

Deb 27

  • Hero Member
  • *****
  • Posts: 806
Re: Lost hope
« Reply #20 on: January 02, 2016, 03:08:00 PM »
Sharon, I am so sorry that you are having such a tough time. I had a hard time tolerating the plaquenil too. It messed up my stomach. Try switching brands, or start out with a low dose or if you can afford it, try the name brand plaquenil. I take the generic by Sandoz with a full meal and do ok with it now.  Good luck to you, this is a tough disease at times.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

SunshineDaydream

  • Hero Member
  • *****
  • Posts: 713
Re: Lost hope
« Reply #21 on: January 02, 2016, 04:08:52 PM »
Sorry to hear you were feeling to slow after getting test results. I hope you are feeling better now that others have suggested more options for you to try.

Plaquenil provided relief for me within weeks.

Eye damage from plaquenil is rare, and even less likely to occur since the dosing guidelines were revised in 2011. If you haven't been to an opthalmologist yet to have eye tests particular to plaquenil done to establish a baseline yet, go and do that when you feel you can tolerate taking plaquenil. It's important to establish the baseline before or early in the treatment so the doctor can compare test results during your subsequent annual exams and observe any changes.

If you are really concerned about eye damage from plaquenil. getting your eyes examined every six months rather than annually could make you feel better about the possibility of earlier detection of any changes.

For the purpose of full disclosure, I was diagnosed with plaquenil toxicity (retina damage) in 2009 after being on it for 4.5 years. Upon diagnoses, I had to stop taking the medication immediately. I found out during an opth appointment scheduled between annual plaquenil monitoring appointments because I needed a new eyeglass prescription after losing my sunglasses. I didn't notice any plaquenil related vision changes before or after the diagnosis. The opth noticed that I didn't do well on the plaquenil monitoring tests and referred me to a retina specialist. The condition is so rare that none of the three opths I've seen subsequently as a result of moving (including a John's Hopkins trained opth with 30+ years of experience) have ever seen a case of it other than in a textbook. The 2011 revised dosing guidelines would have me on a lower dose of plaquenil if I were still eligible to take it, which I'm not though I wish I were. Bottom line is opth appointments to establish baseline and monitor thereafter are key with plaquenil.
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

Sharon

  • Hero Member
  • *****
  • Posts: 1329
Re: Lost hope
« Reply #22 on: January 02, 2016, 04:35:03 PM »
Deb- thanks, I'm taking the name brand Plaquenil since that's what's available here. It messes with my sleep and makes me dizzy and fatigued but I'm currently working towards tolerating it.

Sunshine- I'm still in partial shock from the test results and in some denial as to their reliability.
But it has definitely been a wake-up call. I need to begin medication.
So yes, what concerns me most about the Plaquenil is the eye damage.
I don't care that it's "rare"- I have a knack for winning the "bad luck lottery". :(
What exactly do they need to check for the baseline?
Thanks for mentioning this, since the rheumy who prescribed it didn't say anything about establishing a baseline!
What dosage were you on when your toxicity began?
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

Joe S.

  • Hero Member
  • *****
  • Posts: 7694
  • Fibro, Sjs, RA, CNS, Diabetes, TIA's, ADHD, ptsd
    • Chakra Force
Re: Lost hope
« Reply #23 on: January 03, 2016, 06:24:55 AM »
Because of our conversations I did some experiments last night. 3 hours into the night without the added warmth around my saliva glands and they were very painful. I kept just them warm and two hours lated my ear glands/tubes hurt. Adding the extra warmth there and a few more hours and both are a little sore.

my conclusion is that the added warmth of a mumps scarf is the main  thing you can do to reduce the gland pain in your head. Scrooge had Sjogren's. He wore a mumps scarf to bed. He wore slippers and had crafters gloves indicating raynaulds. "A Christmas Carol" by Dickens, is about someone with our illnesses!

try not to wait for the visitation of three spirits to choose to be happy. ;)
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

cccourt1942

  • Hero Member
  • *****
  • Posts: 1532
  • Suffered from numerous symptoms for about 25 years
Re: Lost hope
« Reply #24 on: January 03, 2016, 06:44:50 AM »
Joe:  apparently you have never spent the night in a drafty English (or Scot) LOVELY old home....with original fireplace for heat...for the entire place.  :)  You must wear your socks AND gloves...plus stocking cap ....for warmth.  The comforters and WARM, woolen mattress pads are yummy!!  (and later ---flannel sheets)   Typical fare in city in countryside!!  Germany and Austria follow suit.  I dreaded those trips due to my sensitivity to cold....but populations who live with those conditions make do with wonderfully warm practices!!  Never visited the Scandanavian countries...but believe they are likely the BEST!! 
ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

Joe S.

  • Hero Member
  • *****
  • Posts: 7694
  • Fibro, Sjs, RA, CNS, Diabetes, TIA's, ADHD, ptsd
    • Chakra Force
Re: Lost hope
« Reply #25 on: January 03, 2016, 07:41:41 AM »
Yes, most of my life has been in a home with central heating. My dads mothers house was two log cabins put together. A kerosene heater in the living room and wood stove in the kitchen. The bed rooms had floor vents. My cousins farm home with a fire place no floor vents and an outhouse are among my christmas memories. Another cousin had a victorian farm house. The the only heat was from the cook stove in the porch. It had an outhouse 20 yards south west and an out side pump 20 yards to the north east. Hurricane lamps were common for lighting. Yes we had to dress warm if we could. Since we were not wealthy we had to be active to stay warm. Most of yhe time, our windows were cracked open all year, day and night for fresh air.

No, I do not know of the drafty old buildings of Europe. I do know of the warmth of a teepee, a Mandan earth lodge, an igloo, and a snow bank. These are fond memories of being warm. The igloo was heated with a candle and we controlled the draft. It often reached temperatues in the 80s in side the igloo. You heat it up to form ice to better reflect heat. I would love to see the isles and Europe some day on a senior handicap tour. Our oldest daughter spent asemester in England and we sent out youngest on a honeymoon art tour of Europe.

bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

quietdynamics

  • Hero Member
  • *****
  • Posts: 2399
Re: Lost hope
« Reply #26 on: January 03, 2016, 08:55:02 AM »
I was not doing well with plaquinel and pilocarpine among other meds.
Made appt to go to Sjogrens Center.
Among labs, Dr. also order Nuclear Medicine Salivary Test --> result: damage, dysfunction Parotid.
*Fortunately parotid provides 25% of saliva with other glands providing the rest. Adding some lemon juice to sipping water can help.

Dr. had me do a trial of extended prednisone with labs. Then consult.
At follow up lowered plaquinel and added Methotrexate (labs every week to start), pilocarpine 5 x /day. and tests showed low in Vit D and B.. so that was addressed.

There is some tweaking.
There is hope.

Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Joe S.

  • Hero Member
  • *****
  • Posts: 7694
  • Fibro, Sjs, RA, CNS, Diabetes, TIA's, ADHD, ptsd
    • Chakra Force
Re: Lost hope
« Reply #27 on: January 03, 2016, 09:41:45 AM »
I am glad youhave found some hope.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

quietdynamics

  • Hero Member
  • *****
  • Posts: 2399
Re: Lost hope
« Reply #28 on: January 03, 2016, 10:14:36 AM »

Joe that change was a long time in the making and not perfect.
Just a bit of progress.
Currently I am in a 'zone' of needing to give my body a rest from some meds due to 'wonky' labs.

I watch talks on TEDTalks to learn new things.
Watch inspiration videos by people who overcome life events, birth challenges, etc.. and push on.

Right now I am back to physical productivity of 20mins, then rest.
Over the summer it was 6-8hrs.. wow.
So there is hope .. I can get back there when meds resume.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

DarleneB

  • Jr. Member
  • **
  • Posts: 75
Re: Lost hope
« Reply #29 on: January 03, 2016, 11:19:06 AM »
Sharon...I would try and import the evoxac...what a life saver it was to me...went from no spit to drooling a little at night....
Sjogrens, coronary artery spasms,arthritis, degenerative disc with spinal surgery,hashimoto, high cholesterol,low vit d ,insomnia

evoxac,restasis,tear duct plugs,asa,cardizem,toprol,fish oil,levothyroxine,,calcium with vit d,  irbesartan,restoril,est/prog/dhea/testos crea