Another Sjogren story and a question on plaquenil

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1

Hi,

first time writting.. I might be.. I don't know slow to get a hang of it but do find it hard to accept to be sick.

My fiancé dump me like a bag of rotten potatoes when we learned I was sick...

we had big nice projects together,

but he didn't want to slow down... for anybody..

he prefered to keep going for it with any other healthy women

he abandonned me a month after making me believe we would get married ( I guess he wanted to look like a hero and then realized what it really meant to be one)

He actually said he "couldn't wait for me to get better" 24h after the clinic called (by mistake) telling me they had my test result (for lymphoma) but they couldn't tell me on the phone and gave me an appointment. It was a (nerve racking) mistake and in the end it was negative, but the man I loved so deeply had already run off and I had cried like never before in my entire life ...in a twisted way I guess it's almost a blessing to have so much tears when you have Sjogren!

That was 6 months ago exactly and I'm still not over it.

but enough whining for now...

Like most of you, I have been prescribe plaquenil (and anti inflammatory for articulations) But I haven't started taking it and I do feel a lot better and less tired since summer arrived. The pain (articulation) is also gone... but i haven't done anything special really.

From what I understand plaquenil doesn't slow the diseased, so whether I take it or not it won't really change anything in the long run... but I might be wrong, I'm still new to this ******* condition (and obviously angry!)

What do you think and what do you know, from your own experience, is it important that I take it as soon as possible? (my rhumy and family Dr didn't convinced me yet, especially since I started feeling better without it..)

Thank you for taking the time to read this,

I might be inapproriate or negative... I'm sorry for that

I try to show strenght with friends (not to annoy them) and family (not to hurt them) but the truth is that I feel so scared and alone in this.

I sure wish everyone here the best,

sending lot's of love and good vibes to you all,

C

2

I was on Plaquenil for nearly 19 (yes nineteen) years and finally had to stop it as I had developed Plaquenil toxicity (caught early as the toxicity is mild and I am still cleared by the retina specialist to drive). If you are having a lot of fatigue and joint pain, I would agree to start on it. It may take up to six months to kick in but it's worth it if it works, as it can prevent or diminish the frequent flares of pain and/or fatigue. In my case, I was initially diagnosed with pulmonary fibrosis related to Sjogren's and about six years ago, my lung specialist declared the fibrosis as "resolved". That was confirmed with an X-ray and CT scan, so I feel that the Plaquenil was responsible for it going away.

If you do start Plaquenil, make sure you get your eyes checked at least once a year by an ophthalmologist without exception as they have special tests to monitor your eyes. I went faithfully as required and feel blessed that I was able to stay on Plaquenil for so long.

As far as your boyfriend dropping you, many men want to fix things, and since this syndrome is chronic, they can become frustrated that they can't fix you. I broke up with my fiance 2 years after my diagnosis, but I will be celebrating my 18th wedding anniversary this month with a caring man who I met 6 months later. He had worked in the medical field so my illness did not spook him (and I did tell him about my disease early in the relationship.) He still understands that I will have days that I will not have as much energy and also have more pain. We're both retired now, so he helps with cooking, housework, etc. when I've having a low energy or higher pain day.

BeckyJo

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Hi Becky,

thank you for your answer. The first flare up lasted many months and was terrible, so much fatigue and so many symptoms all at once but since it got better, it feels good to hang out in the denial phase!

I have no idea how it's gonna evolve for me or if the flares up will be frequent. but I feel like I want to get to know this thing better before taking the plaquenil so at least i can see the difference if do start taking it. And maybe I can find out what makes it better or worse. It's my instinctive approach, but to be honnest I don't really know what I'm doing..

If I had started taking plaquenil this winter I would have thought it was because of it I started feeling better. On the other hand now I can't know if I would feel even better with it. I wish I could clone myself into 30 identic individuals and do some research on with my own control group!

Did you see a big difference when you stop taking plaquenil?

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I was only off of Plaquenil for two weeks before I started taking another medication, Imuran, which is an immunosuppressant that was initially used to prevent rejection of kidney transplants. I've been on Imuran for 4 months now and I'm feeling better than I have in over 5 years. Usually, they don't start you off on Imuran unless you have severe RA or Lupus. I have to get complete blood panel tests every 3 months to monitor my kidneys, liver, red & white blood cells , etc. as it's definitely stronger than Plaquenil.

As for how you will feel when you are on Plaquenil, many patients don't realize how much better they feel until they have to stop taking it and then they realize that it really was helping their quality of life.

If you're in the USA, there are some local support groups that you can attend and you will learn a lot about Sjogren's and what others do to manage their Sjogren's. The Sjogren's Syndrome Foundation (sjogrens.org) sponsors groups around the country, so you might want to check their site to see if there's one in your area. There is also a lot of other information on their site about living with Sjogren's, medications, etc.

Do you have the dry mouth and eyes that many with Sjogren's patients do? Make sure you go to see the dentist 2-3 times a year for cleaning and monitoring as a lot of Sjogren's patients end up with tooth loss from the disease

BeckyJo.

5

Hey, Plaquenil is a disease modifier so it does slow the progression. It helps a great deal with the fatigue and can ease the joint pain. If you search the old discussions, one of our people did a full scientific/medical explanation on it. For me, it has been great. As with most meds, you have to follow orders and be monitored but as long that's done, they will catch any changes before it becomes a big issue.

I am sorry to hear you were hurt so badly. Its very hard to deal with a diagnosis like this, that beings endless new norms, by itself. You need time to properly grieve for the relationship and loss of the ideal.

We all deal with not showing how we are really feeling for a number of different reasons….sometimes many at the same time. LOL. Its so odd having an invisible illness. I occasionally have days where I wish I looked like I felt then lots of days I am glad I can hide it. Who knows? Stick close to your support systems, including this group. It really helps to be around people who understand.

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Hello, Thank you for that answer, I'll look for that discussion,

I'll probably take the plaquenil eventually.. getting this kind of info will help me reconsider it. It's something that is hard to accept, i'm taking my time. When I have good days, I somehow feel I'll be fine (like today!! - I'm so thankful for those good precious days). I know it's denial, but it feels so good to put my head deeply in the sand, I can't helpt it :) Then I feel like I'm not gonna be sick anymore by just changing my emotional (disastrous) life, by quitting my stressful (but awesome) carreer, by leaving my country during winter to stay warm all year long. I know I'm dreaming but I need to give it a shot and hope... even if I do know it is denial.

It is good to be in contact with people who understand :)

Cheers,

C

7

Thank you for sharing your story. I hope you are doing better. I am sorry about your loss, still, he was obviously not the right person. This disease is very challenging. After being diagnosed I felt so overwhelmed. I understand how difficult it must be for you to handle so much at the same time.

Do not feel alone, we are all in this together. I do recommend The Sjogren's Book. It is very comprehensive and has helped me understand better what this disease is about and how to help myself.

Initially, my friends and family did not understand what I was going through. I decided to send them articles about the disease. Now I post information on social media to create awareness of Sjogren's and other autoimmune diseases.

You are not alone. Let me know how can I help.

Blessings!!