placquenil use how long does it take??

[Patti D]

Hi all,
I haven’t been on the board for a couple of years but do check in:) Well things were going well, took a vacation and went from -30 degree weather in February to 88 and humid and wow, first major flare in 7 years. I had forgot how horrible you feel from head to toe. Dr. put me on placquenil (spelling?) along with the mino. Have been on it for over 3 weeks and still feel horrible. No energy, living with all of the stinking heating pads on every where. No sleep and of course the joint pain just about everywhere. This time refused the prednisone so no relief. The anti inflammatories (suldinac) don’t do a thing.
Should I get the cortisone injections to open up both hands. Any help appreciated:)

[sandrabonfield]

Hello
I was told it would take six weeks to three months for the plaquinil to kick in, if it works which it did not for me. Most times if I have had a steroid shot it was immediate relief and although I didn’t like doing it, there were times I just had to.Hope that helps you.

[Patti D]

Thanks Sandra!
I had one about 5 months ago in both hands and felt immediately better. I could not believe how well the shots helped as I had ultrasound guided injections in both hands so they hit the spot right on. I am tired of feeling so crappy. Hard to run my business plus I am a pretty upbeat busy lady 😀 I am sure my family is getting tired of hearing me complain 🙁

[richie]

Hi I would say absolutely get the shots –relief in one or two days !!!!!!!!!!!!!!!!!!!!!
richie

[Patti D]

AMEN Richie!!

[Trudi]

Hi Patti–
It breaks my heart to hear you are having a flare. Be careful with the placquenil, it is in the quinolone family of antibiotics which caused a huge amount of damage to my tendons and ligaments. Admittedly, my MTHFR double mutation makes me more susceptible to injury and difficult recovery.

In any event, my heart goes out to you. BTW, I have 4 grandsons now. In this respect, life couldn’t be better :)!!

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[lynnie_sydney]

Hi Patti
Lovely to see you but so sorry it’s because of this. 🙁 I think we all have to do whatever we need to do to keep functioning. Let’s hope the Plaquenil kicks in soon (think 6 to 12 weeks is the timeframe usually). I know Bonnie (bonnielou) has done well on a mino/plaquenil combination.
viewtopic.php?f=1&t=10088&p=72808#p72808

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Patti D]

Trudi dear friend!!!
4 grandsons! WOW. So glad to hear this. Hope you are feeling well. Well with 4 grandsons 😀 You know just coming on this board again has given me a little spark. How are you doing? I am sure this winter was hard on you as well. What a beast it was with these constant weather changes ( today and yesterday too)
I fought against the plaquenil for 2 months but as you know the RA flare 😡 won. I really am not a pill taker and now I have these 2 extra pills to take. I saw on this site that Maz takes the plaque nil along with others on this site so thought it was the least dangerous of the list to take. So nice to hear from you. Happy Easter!

[Patti D]

Hi Lynnie,

You know it really makes me feel all comfy to hear from my friends who got me through the first round of misery 7 years ago. I fell lucky that I felt so good for just about all of those 7 years minus a few bad days here and there but Maz did warn me and say with the lyme onset most people had a combination of medications to hit all of the bugs. I was looking at Bonnie Lou’s because she was diagnosed at the same time as I was and she too had to add the plaque nil so. 4-6 weeks is very stinky. I walk around the house attached to 2 heating pads at all times 😡 I am on week four and don’t think I can take this much longer without relief from the cortisone injections.
Tried acupuncture and chinese herbs that I seemed to have had an allergic reaction too. Trouble breathing and rapid pulse. When I start to feel like me again I may take up yoga. Thank you Lynnie for still being here 😀

[Trudi]

Hi Patti–
I’m actually doing quite well “mentally”, but physically not good at all. At home I use a walker and each step is painful. I’m in a wheelchair when out and about, which is rare because it’s too much work :(.

Time is what is needed to heal from the quinolone damage. I’ve heard it can take anywhere from 5 to 10 years. Different theories as how it does its damage. Dr. M (female) said one is that it causes intra-cellular scurvy. That would make total sense for me. So we take it one day at a time!!

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[bonnielou]

Hi Patti — nice to see you again, but sorry to hear you are struggling so. I started the plaquenil and the mino at the same time. (October 2007) It’s hard to believe I have had this disease 7+ years. About 20 months ago I also was having some bad inflammation in my hands. At that time my rheumatologist really wanted me to start methotrexate. That’s when I decided I need to see an experienced AP physician, and scheduled my appointment with Dr. F in Riverside. I did have one cortisone injection in my right hand. But cortisone can also do long term ligament and tendon damage, and I did not want to have to repeat that.

Dr. F changed my schedule — he upped my mino to twice a day, MWF, and kept the plaquenil at the same level. I have been doing fine ever since. Of course we never know what might change, and this winter here in Chicago was miserable. But I have held up okay. It took several months for me to respond to the mino and the plaquenil. I don’t think 3 weeks is long enough. It stays in your system for awhile after you stop as well. (I have had to stop several times to take other anti-malarial medication when I traveled to Vietnam and Honduras. Plaquenil is no longer an effective anti-malarial in some locations now).

Anyhow, maybe a short course of prednisone would be helpful? Does your doctor have any other ideas? I don’t remember who your doctor is but I do remember you really liked him or her. Have you tried any other anti-inflammatory supplements? That might also help. Keep us posted. I will be thinking about you.

Bonnie

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[Patti D]

Hi Bonnylou,
so great to hear from you. I know the plaque nil takes a while to kick in. I refused the prednisone orally as that stuff made me crazy, paranoid,moody and lets not forget the 40 lb of weight gain. Having the cortisone injection is still steroids but into one joint under ultrasound guided into a specific spot. Seems safer and if the fluid continues to crowd out the joint, the damage will come from the fluid I believe .Swelling and the loss of range of motion.
Did you have any side effects from the placquenil? Thanks for chiming in. So glad that you are so well 😀 I am going there just not fast enough:)

[Patti D]

Boonie I forgot to mention that my rheumy has tried me on mobic which didn’t do much and now has switched to suldinac which also does nt even take the edge off. Both prescription anti inflammatories. My doctor did say there were 20 to pick from and we should find which works for me:)

[Patti D]

Bonnie,
I was to Vietnam serval years ago on vacation and didn’t take any anti malaria meds. Also to Honduras, Roaton no meds there either. Boy have things changed.

[bonnielou]

Hi Patti — my trips to Honduras and Vietnam were medical missions, not vacations 😀 . Roatan is the tourist island; we were on the mainland in a less friendly location. It was one of many precautions.

I used celebrex for pain early on. I still keep a prescription handy, although I rarely have used it in the last several years. The only side effect I had from plaquenil was stomach upset — and I was taking the mino, plaquenil and celebrex all at the same time. Those can all be hard on your stomach. That passed after the first 3 or 4 months. The mino still upsets my stomach; the plaquenil does not.

I do get regular eye exams. My husband is an ophthalmologist so it’s pretty convenient for me, and of course he is very careful with my eyes. He has taken care of a lot of patients on plaquenil over his 30 years of practice, and has seen almost no complications. It can happen of course, but he finds it really rare. I have not had rashes or any of the other symptoms people report. I am comfortable on this drug. I take a little less than my doctor would like — I only take 200mg/day, and by weight I should be at 300. But everything is working right now.

I know the prednisone is a tough drug to take and to quit — it’s just hard when you are so miserable. If it is just your hands I understand the shots, but it sounds like you are feeling ill systemically. The acupuncture also helped my hand. And when you get better, do the yoga!! Find a gentle class and start with very gentle movements. Keep the joint fluid moving is really helpful to our health. I wish you lived closer — I would bring you to my class!

Get well.
Bonnie

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

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