30 year lupus vet, just starts meds...

[mariearmstrong]

I'm 51 and just started taking meds after 30 years diagnosis

Chapter One-

I was 5 years shunned and abused by doctors, then when they acknowledged my condition (20 years ago) they didn't push drugs, mainly because I don't think they had a lot of clinical stuff to back them up.

Chapter Two-

I put myself into remission over the period of next 10 years after that. I was still young and determined.

Chapter Three-

Menopause came along, and hell broke loose. I spent 5 years trying to 'put' myself into remission again. It didn't really work for me so I tolerated Lupus symptoms for 3 more years until I had to be hospitalized.

So here I am a 30 year Lupus vet,....first time on drugs LOL. When I realized what the hospital and high dosages, and doctors respect (and obviously more knowledge than 15 years ago) and more knowledge, confidence and scheduling did for me, I felt comfortable going on the drugs and now taking them religiously. I also keep a diary of they meds (I'm a little anal that way, but it also keeps me involved with it to a point where I feel I have some control at least) I recommend this to anyone who feels they need to add some control to their input.

So my first month on steroids, felt great, and they introduced Plaquenil to me 3 weeks ago. Not feeling too great since then. I think I'm getting an ugly "MOON" face from the steroids, which is lovely, but I’ll just have to tolerate that one for a while. I'm scheduled to be weaned off steroids in about a month or so.

My big question is: I know I have to be on the Plaquenil for a period to find out if it works for me... How will I know it’s not working for me if I already have reservations about it? Since taking it (and weaning off steroids at the same time) My Lupus returns. Is there some sort of 'honeymoon-get ta know ya stage with Plaq?

4 weeks ago in the hospital I felt like a super human. I liked that feeling!!!! LOTS!!!!!!!!!!!

So now I call this chapter 4-

Having felt normal and fantastic for two weeks, then starting the long haul of trying out drugs and facing Lupus symptoms again. I think I got a book here.

[Jill_beachweather]

Hello. I'm new at this, I think. I truly believe I had this as a young child. My Lupus factor was doubled and all other tests were normal. I took the plaquinol for 5 days and it felt like someone had beat me and I couldn't hardly walk my students to the cafeteria! I was also feeling very depressed and upset. That is totally not my personality, nor how my body feels. I don't have a lot of pain. I just ache when cold weather comes around. My skin (mostly my chin area) is peaking with red areas. It itches and feels like pins are sticking in me. I'm investigating the natural way and hoping someone reads this that may have some life changing suggestions. May GOD greatly bless you along with all of us!

[littleeffie in reply to Jill_beachweather]

It took two to three months of hydroxy to get past the side effects and get some better feelings but on it for a few years now and would not be without it now. I think it's improvements are gradual so it takes time.

As for the rash on chin do you sit close to PC as I am and quite a few on here suffer sensitivity to PC screens, strip lights and many other light sources including TV. I wear 50+ sun factor everyday and reapply during day especially if watch TV or on PC with filter screen .I also wear a wide brim hat in shops, at GPs and hospital or office environment (which I avoid like the plague due to all screens and light sources) .It doesn't affect everybody but if you are light affected sunscreen and hats are a very easy and none medication thing to try.

Hope that helps. There are loads of folk on here with great advice so you should get a little of help

[mariearmstrong in reply to Jill_beachweather]

I did 'natural' for many many years. but in the end it would have killed me for sure. I hear ya on the Plaquenil. I feel a little space cadet since starting it, but I guess I gotta give it 3 months. gotta tell ya, I love prednisone tho. it gave me my life back. I don't feel I threw in the towel, I feel I bargained for my life back.

[AnnNY]

I have taken plaquenil 9 years in total, 7 years starting in the mid-eightes, and two recently. I have never had a side effect that I could notice. When I took it the first time I had a pretty constant low grade fever. Six weeks later is was gone and it never came back. Feeling better for me was very slow and in almost imperceptable steps, but gradually I just kept feeling better and better. When I was able to enjoy food again, I knew I was hugely better. I went into an almost remission and even when I stopped plaquenil the first time, I stayed in remission until about three years ago. And I'm still not where I'd like to be. But I may go on a DMARD next year.

[Lorelei in reply to AnnNY]

Ann,

Can you please tell us what DMARD stands for?

Hope you will feel better and better! ❤️

Lorelei

[misty14 in reply to Lorelei]

Hi lore lei

DMARD stands for disease modifying anti- rheumatic drug. X

[mariearmstrong]

thank you! that was very informative and reassuring

[AnnNY]

Good luck. Hope it works for you.

[Lorelei]

Marie,

Steroids make all of us feel WONDERFUL! They create a feeling of energy and wellbeing that comes on quickly, and it's like arriving in heaven if you've been very sick with lupus for years or months! Every time I go off of steroids, I feel much worse. When I'm on steroids, I can RUN up steps! When I'm not, I go up slowly and go down one step at a time.

When I recently re-started Plaquenil, it took two months for me to slowly, slowly feel a little less joint pain, but the difference is so worthwhile!

So it sounds to me as if you're having similar responses to both drugs as I have. Try not to be too disappointed with how you feel when you go off steroids. It's not good to stay on them for too long, my doctors say. And give the Plaquenil a chance. It may be doing more than you realize!

Be well!!❤️

Lorelei

[mariearmstrong in reply to Lorelei]

brilliant information, and thankyou for sharing your experience. I will take that information to the bank. I have been informed that 3 months on steroids should be max and that weaning is your most important goal. im already sad that I have to be off them, but health comes first. I will give the Plaquenil a chance and I suppose I 'shelf' the prednisone for major issues and flareups in the future. Im getting the moon face a little bit LOL. oh well, certainly livens up the conversation with people. but read that has a good chance of reversing too. I love having my life back!!! even with glitches. the last 5 years were hell. made me a stronger and funner, (maybe the two are linked) person. I know there may be other drugs coming my way, and I have to babysit my little organs now. I have a picture on my wall that says, "life is not about waiting for the storm to end, its about learning to dance in the rain." it was my guide for the past 5 years and I used it in meditation, and did lots of yoga during the worst years. I feel im a professional dancer in the rain now

[Lorelei in reply to mariearmstrong]

Marie,

I started doing yoga in 1999, two years after my diagnosis with lupus. It is so helpful, physically and mentally! It helps me to push myself to keep my very painful joints flexible and to relax when experiencing pain.

I love your quotation! We cannot wait for the storm of lupus to end or life will pass us by! I've entered the saying into the "Notes" on my phone where I'll see it often ... and think of you.

Wishing you health and peace,

Lorelei

[mariearmstrong in reply to Lorelei]

I also do a lot of meditation and look up some of those 'positive guided meditations' you can get on the internet. lots to do with getting healthy, and making yourself well. I truly feel they work!!

[larainehudson49]

Can anyone explain how one can put ones self into remission, I dont understand. Thanks

[mariearmstrong in reply to larainehudson49]

first of all, I was much younger and not in any menopause phase. I used 3 basic rules: allergies, infection, stress. controlling all three of these and adding a strict diet designed for your blood type, adding regular exercize, I actually got my numbers and symptoms down for many years. a super functioning and very routine life, but this came with lots of research. then along comes premenopause= tons of unexpected stress. a total life change over is not easy for any woman. they treated with hrt. instant mistake for me. ill never go near them again. super blood clots everywhere/life threatening=tons of stress. during my younger/healthier phase of low numbers and low symptoms I got silicone breast implants that erupted 6 years later....right in the middle of menopause. Near death experiences for a few years until I could get to a proper city with proper clinics and regular specialists. had the total mastectomy =70% improvement. finished up menopause with Prozac =20% improvement. Now on drugs after a total overhaul in the hospital after several organ malfunctions. I feel almost 100% again. and looking forward. age, menopause, stress and foreign toxins in my body all contributed to life threatening lupus. would be nice if life didn't have any hills or valleys (like mine did for several years) but when those hills and valleys start coming your way, pay attention, seek medical support.

[larainehudson49 in reply to mariearmstrong]

Thank you, thats very interesting. Wishing you all the best

[Hidden]

Hi - I've tried three DMARDs and an immunesuporesant and many periods on steroids. I'm not sure if I'm in remission or not because I've only been diagnosed with RA and Hashimoto's hypothyroidism so far and am trying new BP meds for hypertension and have recently been having blood in pee with achy feeling around kidney and bladder. My synovial joint swelling has disappeared now after two years on methotrexate with Hydroxichloraquine. I had to stop both of these several times and also Sulfasalazine because of allergic reactions.

The Hydroxy initially seemed to lessen the joint pain a lot and I only got a facial rash (a butterfly shaped one) the day after taking methotrexate which I had already been on for six months. I then took the two together for a year until I suffered overwhelming pins and needles so Hydroxy was stopped. The pins and needles have never gone away - I have them constantly everywhere including my face now.

After a while the nausea and sickness from methotrexate injections just defeated me and I stopped this too. Then was put back on Hydroxy on its own - which worked really well for my pain and inflammation but I had to stop taking it after four months because my face was so itchy and painful and kept swelling up. The day after I stopped the rash went and my lips reduced size by half so my GP explained that this was anaphylaxis - same as I'd had more dramatically with the Sulfasalazine a few years previously. All these drugs, even Hydroxy/ Plaquenil, are fairly powerful and a few people like me have bodies that just seem to reject them - either immediately or else quite slowly but surely.

I only managed three weeks on Azathioprine earlier this year when pancreatitis struck and I was hospitalised twice by it. I can tolerate Prednisolone but it fattens me up badly so I'm off it again now and not significantly worse for this. But most of my troubles have been neurological for a few years and this might be a legacy of previous drugs or unchecked autoimmunity so isn't necessarily because of active disease I'm told.

I suppose I might be in remission because I believe all autoimmune diseases can fluctuate in severity due to hormonal changes or whatever. Or I might just have got used to being in a certain amount of pain as I have always had pain of one sort or another. Or the DMARDs and steroids have chased off the worst of the symptoms and enabled me to just take BP meds and regular paracetamol and this is enough for me just now. I think some people do go into drug induced remission but I'm guessing that if autoimmunity is there it will flare up again if left unchecked for too long. I do try to exercise daily and eat a very careful, fresh, wheat and dairy free diet and feel this helps to an extent. I also take AdCal D3 daily on prescription (low D levels) and Levothyroxine 100mcg.

[mariearmstrong in reply to Hidden]

I think the definition of 'remission' is when your blood tests come back fairly normal for a certain amount of time. when coming off the drugs to deal with remission I would strongly recommend evaluating your life to be sure the stressors, anything that could pose a risk of infection, and anything to do with allergy (foods and chemicals around you that you are already highly sensitive to anyway being an auto immune) are free and clear and controllable. your diet should be religiously strict, I found the "eat right for your blood type" to be very supportive diet. exercise is important, but you must use it for stress relief more than for power building. This was my ten year recipe for a successful self induced remission. Im not there now, but could be sometime in the future again. and I wont forget those ten years I had control. not easy, but for me it was factual.

[Hidden]

I agree about diet and quality of life etc. I moved to a new location three months ago and am now busy, creative, closer to family - a new landscape to enjoy etc so am feeling much much better health wise because I'm no longer depressed.

A professor of connective tissue diseases explained to me that systemic inflammation can rise and fall regardless of active disease if you have clear autoimmunity. I've never fully understood this but his point was that you can have Raynauds and Sjogrens that are actively annoying without RA symptoms being active and erosive. Or the other way round, as I used to be where my hands and feet, knees and wrists were stiff and terribly painful, but I had no fatigue, no rashes and my eyes weren't dry. no one in my medical team has ever mentioned remission of any kind to me so I guess one set of symptoms can remit for me while another lot can flare. I think that I have a lot of overlap stuff rather than one clear cut disease.

As long as it's just a nuisance I'd rather not take any more immunosuppressants because I believe I can self manage, as you did for those ten good years. What scares me is the way this autoimmunity can sneak up and do awful things when we have got used to ignoring symptoms for the most part. It's the sneakiness of this disfunctional immune system that needs watching like a hawk!

[mariearmstrong in reply to Hidden]

yes and stress comes in all sorts of shapes and sizes. during that bad 5 years I had my father also died tragically, my daughters father died tragically, menopause was just plain abusive (glad that's over), lost my business, and I had to move to a new location I hated, and was bored and depressed there. my lupus responded quite loudly to all of those stressors. but we can t help it in life. if we have lupus and life is flowing along smoothly, we have some sort of control. then when hell hits the fan, we are in jeopardy and must seek medical help asap. all the drugs and stuff during this time of crisis can be so intimidating and scary all by themselves. like hitting a brick wall of terror. that was me. I ended up in hospital in an ambulance, or I might not have made it. in the hospital I learned that it was now my time to look after myself and that I had teams of doctors and support. even therapists. and I learned that it was not going to 'go away'. lupus is for life. and that we cant control tragedies in our lives.

[Hidden]

Yes RA is for life too - as is thyroid disease. And I had too experienced three tragic, sudden bereavements (both my parents and best friend's only son all in a few years) and this is when RA struck. But I've always had horrible flares of this or that - lost all my hair, skin dreadful etc and strangely they haven't always corresponded directly with the tragedies I've experienced so I think it's all cumulative with me. I agree that being bored and depressed makes us more vulnerable but it also makes us more aware of pain and ill health. So are we getting worse because we are bored and depressed or are we just picking up on stuff that would have occurred anyhow because we are focusing inwardly?

So I'm not really that certain which comes first with me but I think my autoimmunity goes back to stuff that happened to me physically as a baby - and it manifests itself in many different ways as hormones surge and wain. This makes it hard to keep track or observe patterns. The thing that's so frustrating is that some doctors can't just take our word that things have changed when they should trust us to know when something just isn't right. Tx

[mariearmstrong in reply to Hidden]

from insecticides, herbicides, and chemical compounds being churned out by the millions, water and food poisoning, to vaccines and questionable medical and dental practices, our generation was BOMBARDED with so much unnatural chemical poisons that it isn't even funny! and our generation is reacting physically and mentally to them. we are not to blame and we are not going mad. its real. and the best thing for big corps to do is to look the other way and take the money. so makes the population look like its in there head. meanwhile.....people are feeling crappy and unable to work, and go to school and look after their families. this is serious business ohh, and lets not mention the pharmaceutical corps are making a killing off of us...our generation was the MS/CF/Lupus and fibromyalgia generation. Our kids are all getting autism and juvenile diabetes and cancer.

[Hidden in reply to mariearmstrong]

I agree although I'm the only person in my family to have an autoimmune disease and I attribute this to other things relating to misguided parenting when I was a baby.

I'm guessing you are American? I know I found it very difficult to find fresh foods and organic/ungenetically modified foods when I visited the States for the first time last year. I think that the UK and Europe have a far more regulated food industry where crops aren't allowed to be genetically modified. That said we have plenty diagnosed with Autistic spectrum disorders (my son), CFS, Fibro etc here too and agree with you about the bombardment of chemicals and poisons our generation has experienced. Tx

[mariearmstrong in reply to Hidden]

I am Canadian. and I had symptoms as a child that I had swollen joints sometimes, but never thought about it. I had all my childhood vaccines. my brother was autistic as well. he had all his vaccines. the cannonball was in 1993 when everyone here got the hep b vaccine. for what reasons ill never know. I thought it was a communicable disease at the time, now I know different! chances of getting hep b are slim in a persons lifetime!! well I got the hep b vaccine and I have been sick on the couch ever since that day. I was an athlete with a full time business and family at the time and doing very well. I thought I had the flu for 5 years and the doctors thought I was just a nut case! I have found documented proof since then that a lot of people got lupus from the hep b vaccine. now they are blaming MMR for autism. I believe it all. I experienced it all. Anyone that tells me different has been brain washed by corporations hiding their tracks. My daughter got type one diabetes shortly after a flu vaccine one year. otherwise perfectly healthy. I also got a test when I was pregnant with her to look at all her genes to be sure she was going to be healthy and there was nothing in that test that suggested she could get diabetes. The amniotic fluid was tested, for other reasons, but the test is complete. you get all answers even if just looking for one answer. well now she has diabetes. and so do a lot of other kids now. my daughter will never get another vaccine and either will I. and if small pox comes back we will all die from it anyway. sorry if this sounds like a rampage, but this is how I direct my feelings

GMO is definitely on the list of stuff to get rid of. me and my daughter try to eat GMO free products. and we feel better when we do. that is also not just in our heads. we have sensitive stomachs and cant eat GMO products. they are fighting that here and in south America also.

[Hidden]

I agree although I think my son's Aspergers was caused by my severe eczema when he was in vitro rather than the MRI vaccine. But who's to say what triggered my eczema to start with. And I had the flu and pneumonia vaccines this time last year and had influenza and pneumonia six months later. So no more vaccines for me either! And feel free to rampage away - it's your post!! Tx

[nanleighh]

Hi Marie, I thought the same way as you how would I know if the plaquenil works. I've been on it now eight months. In my case my joint aching and my muscle weakness went away first. But I'm also on prednisones 5 mg daily. At month seven my fatigue started to lift and I have a lot more energy now! I have to say that my brain fog is still as bad, and I have terrible problems with voice hoarseness. I'm just so grateful my fatigue is better and I feel like I'm back amongst the living again. I would say give it at least a nine month trial before you make any judgments, in the beginning it does make you feel sick and dizzy. Those side effects seem to go away after about a month. I wish you the very best of luck in your journey, And hope you find the combination of meds that help you. Hugs, Nan

[mariearmstrong in reply to nanleighh]

thank you that was very informative an reassuring