I was sent to a rhymatholigist by my GP because a blood test came back with a marker of 57 when it should have been 7 indicating a connective tissue disorder, I had mild joint pain in my fingers and one knee, I suffered a little with dry eyes and mouth and had a recurring dry cough and I was constantly tired though I did explain to my specialist that I dont sleep well and this has always been the case anyway he prescribed Plaquenil 400mg once daily I'm taking it for two weeks now and for the first week I was fine and then I started experiencing sever menapausal symptoms , I've been on low dose bio identical hrt patches for the past 6 years because I suffered fairly bad eye and vaginal dryness and hot flushes, I had a hysterectomy 24 years ago, but I've been perfectly fine till the last few days and now all those symptoms are back and ten times worse I also feel weird at times I can't really explain it but the closest feeling I've ever had to this was when I had a general anisthetic and that feeling you get just before you pass out. It seems to me the cure is worse then the condition! Can any one help me please.
Hi Brenda,
I was on plaque ill for 6 months but it caused vision problems plus problems with my muscles. I am now on sulphasalazine but that has caused my lymph node to swell in my neck.
Think I am going down the route of paleo diet.
Regards,
Mandy
Hi Mandy,
The specialist mentioned some other medication but apparently I can't have it because I've had melanomas, what is paleo diet.?
Hi Brenda,
my son is a Dr in American and he told me that the Paleo diet was best for any auto immune problems, it decreases inflammation and it aimed and natural foods. I have just purchase the book Paleo 12 weeks to change your life by Rebecca field. Look it up on the Internet x
Hi Brenda,
I don't want to upset your or anyone else on here by asking an anarchic question
, but if your joint pains are "mild" and you're only suffering "a little" with dry eyes and mouth, why on earth are you taking a draconian treatment like Plaquenil? It's not like it will cure your symptoms or something terrible will happen if you don't take it.
I do wish doctors would explain more clearly that auto-immune conditions tend to vary between flare-ups and remissions, and it's always worth waiting to see whether your symptoms will subside on their own before embarking on potentially damaging treatments. If at the end of six months or so there's no improvement, or if your symptoms are becoming unbearable, then you can start thinking about whether it's worth balancing the potentially harmful effects of treatment against its benefits.
I've had Sjogren's for more than 20 years now, since the age of 50. After a six-year period of being in almost total remission, I went into the mother of all flare-ups a year ago. For three months in the middle of this, I was experiencing so much pain in my right elbow that I couldn't even peel potatoes because the pressure of my finger on the knife sent pain shooting up my arm. The tendon linking my left thumb to my wrist flared up as well, so the combination of the two made most household tasks difficult or even impossible. I also had pain in the tendons in both upper arms, plus a trapped nerve in my neck that added to my woes.
After nine months of taking homeopathic remedies (my personal favourite) I started to despair of ever being pain-free again. But - lo and behold - about a month ago the pain finally began to subside. It hasn't completely gone but I can now do most things I used to be able to, and it gets slowly better every day.
As others in this forum have pointed out, you can also help yourself a lot by changes in diet or lifestyle. Some people advise paleo, while a few go completely in the other direction and swear by a vegan diet. Many people find it helps to go gluten-free while others avoid dairy. I find the best way is to try and identify the foods or food-groups that trigger my symptoms. We're all different.
My sincere apologies to anyone who's been offended by any of the foregoing. It wasn't my intention. I'm a former nurse so I suppose I have a slight head start when understanding the interaction between symptoms and medication - though nothing beats the experience of sufferers. I really feel that people with auto-immune conditions who take charge of their own health tend to do better in the long run. I'm fortunate in having a GP who understands this, but I realise that not everyone is so lucky.
I've taken a copy of this and will post it to you in a private message in case I get modded!
Hi Brenda it sounds like many you can't take Hydroxy. Are you certain it's Plaquinel as I gather that this is no longer available in the UK? Personally I never found it benificial beneficial as I am on Methotrexate. Have you tried Pilocarpine for your dryness and are you using Hyloforte Eye products. Are you a member of the BSSA? I run a FB site on behalf of the BSSA as Dr. E. Price agreed to this in January 2015. Its managed by BSSA members so you will get all the help and support you need. The next BSSA conference will be in Swindon in October on a Saturday. The group is called BRITISH SJOGRENS/SLE/APS/JHS as many are hypermobile. I don't have APS but I do havevSS & SLE and I my hypermoblie too.
Hi Brenda,
I have been taking Plaquenil since Aug. 2014. (400mgs) I take 200mgs in the AM and 200mgs in the PM. I tolerate the side effects better that way. I am one of those that think it is a great drug..and I feel much much better! I am glad Lilly said to give it 6 months because it takes at least that to kick in. Auto immune disease
is different for everybody. I tried the Paleo diet and though I felt better not eating Gluten and Sugar it didn't have any effect on my Sjogrens. Also, after being on it for three months I had a terrible flare of Lupus Arthritis and had to start on the Methotrexate.Which has improved my health so much I almost feel normal. Remember you may hesitate about treatment but Autoimmune does not hesitate it can progress quickly. My personal opinion is stick with the Plaquenil for six months then re-evaluate. Try not to be hypervigilant with how you feel find other things to think about and keep moving forward. Allow yourself time to heal and nurture yourself physically and mentally. The nature of the beast is aches, pains
fatigue and brain fog..you may feel better one day and worse the next. Hang in there it does get better, I feel better than I have in 8 years..no joke. Good luck and feel better,
Sally
Well said Sally, never forget that an AI disease marches on. I know my Consultant is a SJOGRENS expert and suggests a Mediterranean type food intake. With SLE or Lups fruit is essential as we need VitaminC which the body cannot retain. I'm afraid both Dr. P and I both disagree with fad diets. They can do far more harm than good. Likewise internet products from places Unknown. I know we are all different but if you have problems, get a nutritionalist to help. If you have allergies to food then in the UK you can be referred to a specialist.
Hi pam and everyone else,
thanks for the reply's I've woken up this morning with a rash on my chest and upper abdomen it looks like measles and feels like sunburn and hot to touch my heart is racing a little and I'm slightly out of breath and dissy I can't get hold of my GP or Specialist as it's the weekend and I don't know what to do. As Lilly said I too can't understand why I was put on such a serious drug when my symptoms where so mild I don't know if I can take any of the other drugs mentioned as I said I have had three melanomas removed recently and apparently that limits what I can take.
thanks for all the advise if nothing else it helps to talk,
Brenda.
Thanks Lilly,
im trying to contact my GP for some advise because it just doesn't feel right.
Brenda
Actually Sally, I was advising Brenda to come off Plaquenil and wait six months to see whether she really needs it! It doesn't sound to me as if she needs to be on any medication at the moment, but that's just my view.
Hi Brenda,
I've never taken Plaquenil (wouldn't touch it with a barge pole) but I know what the side-effects are and you're describing every one of them! You don't need to contact your GP before stopping this medication, as it's not in the cortico-steroid group. (To anyone else who might be reading this - if you're taking a medication like prednisolone you must only stop it under medical supervision.)
Brenda, it's fine for you to stop and start Plaquenil as necessary. Please don't keep taking it if it's causing such severe side-effects, as this might even be dangerous. I think you should stop taking it immediately, then contact your doctor on Monday.
This is the kind of problem I was referring to in my earlier mail. Although some people suffer badly from their symptoms and need medical help, too many people are pushed by their doctors into taking powerful drugs for relatively mild auto-immune symptoms, and end up in a worse state than they would have done if they'd simply ridden out the initial flare-up.
Once again, I'm posting this into a private message in case it disappears. No need to read both - they're identical.
Hi Brenda,
Everything you have listed is under the un- common side-effects of Planquenil so if I was you I would stop taking it and speak with your doctor on Monday if you're itching you can always take a antihistamine tablet like Puriton hope this helps.
Mandy xx
Hi Lilly,
I also should have mentioned that rhymatholigist thinks having looked back on my records that I may have developed Sjogrens at least ten years ago when I was first experiencing menopausal symptoms which where mostly dryness and which completely disappeared when I started the HRT I have on and off experienced joint pain but nothing that wasn't cured by two nurofen the only big problem I have is fatigue but is that Sjogrens or just because I rarely sleep more that 6 hours a night and rarely longer than four hours straight.
Hi Brenda,
A lot of people on here complain of extreme fatigue with Sjogren's. I don't suffer from excessive fatigue generally, but it does tend to be a problem during flare-ups, particularly during the long one I'm just coming out of now. There've been times in the last year when I felt I was dragging myself through every day, but now the pain is easing off I feel much more energetic. The problem is that any medication you take is unlikely to have a major effect on your fatigue and could even worsen it.
Bear in mind too that Sjogren's doesn't necessarily get worse as you go through life. In fact, in my case the opposite has been true! Although my recent flare-up was a bit of a challenge, it didn't compare with my symptoms during the first few years.
In fact, the most I ever suffered was when I had my first attack of rheumatoid arthritis in 1981, at the age of only 37. That was terrifying. It came completely out of the blue, in the middle of a walk in the woods with a friend and her large dog. Literally within minutes, I went from walking normally to being crippled with pain in my right groin every time I put my foot down. We were two miles from the nearest tram stop and my friend was practically carrying me by the time we got there. I initially thought it must have been an injury of some sort, but when it spread to my left hip a few days later I realised what was happening. After a couple of weeks it was in both hips, knees, big toes, and my fingers and wrists were stiff and covered in painful nodules. I was amazingly lucky in that I stumbled upon a homeopathic rheumatologist, who cured me in six months. (I hasten to add that where I live only fully-qualified doctors are allowed to practise homeopathy or acupuncture, so I wasn't running any risks.) Although I've never been told this by a doctor, I'm guessing that my SS is the secondary kind, as it started after the RA - albeit nearly 15 years later.
What I'm saying here is that you don't necessarily have to take medication to cope with SS. There's no cure for the condition, you can only take things that will keep the symptoms under some kind of control. We all make our own choices, and some swear by Plaquenil or Methotrexate (which is actually a chemotherapy drug). But I know I'm not the only one on this forum who chose the non-medication route. (You there, Barbara?
)
Sjogren's isn't like cancer. It can't be cured in the first place, so it won't become incurable if you wait too long before starting treatment. I can't tell you what to do, but if I were in your shoes I'd hang in there for about six months to see whether there are any signs of remission before opting for medication. Unlike cancer treatment, it won't make any difference whether you start medication now or in a year's time.
Thanks Lilly,
your only confirming what I thought myself but when your new to all of this its all a bit frightening but as the Rhymatholigist said himself that the Plaquenil isn't going to help the dryness which wasn't a huge issue anyway and has only gotten worse since I started taking it I suppose all in all its obvious I should stop and re evaluate. Thanks so much for your input.
get well soon,
Brenda😉
Lily& Brenda!
Oops! Sorry guys I misread! I still stick with my advice though. One thing that was confusing for me when I was trying to get diagnosed is that I would flare and feel awful then two weeks later I would be fine thinking I was getting better then flare again... I lost a lot of time that I could have been using to let the meds start doing their job. If you are showing positive for a problem why wait? At some point you have to trust the medical profession. That doesn't mean you don't keep educating yourself and advocating for yourself. I've seen a lot of procrastination on this site..There has been a lot of research done on these drugs... that is why they are so widely prescribed...Give them a fair shake sometimes the doctor does know best. Feel better,
Sally
hi Brenda, i was diagnosed with SS , a month after I devloped Pityriasis Roscea which was a few weeks after I had been diadnosed with Barretts Esophagus which had followed a chest CT scan which sowed I had small lesions in my lungs (and fibrosis at the tips) ..all in all I was diagnosed with various health issues within a matter of months and i had never heard of any of them until then.. I had very painful elbow I couldnt straighten out or do anything using (had to use my other hand for drinknig tea and hubby helped cutting up food etc ) i also had painful knuckles, wrists and knees and a dry month (cracked lips at sides of mouth ) the rhuem diagnosed SS and presrbibed Plaq to be taken 2x daily, and it worked within a very short space of time...my aches and pains went and saliva back to normal., so I stopped the Plaq. On follow up to the rhuem he was shocked I had stopped but then also asked if I had some to take if symptoms returned, when i said yes to that he was satisfied. I was on plaq for a few months and now been off it for longer than i was on it..my painful knuckes and wrists come and go (esp if i use my fingers for anything which requies strenous work or lift anything heavy) however I havent resumed the Plaq, as my elbow is still OK.(the worst offfender ) my tendons between my shoulder and upper arm hurts when I over excercise with light weights (also have osteoporosis) so i just stop thw weights for a few days then resume. I probably would take the Plaq if my excruciating elbow pain returned but then stop it as soon as it resolved. ..its a standby and gives me comfort and resolve to not jump to taking it when i can cope without..for the time being I suppose I am in remission.
Good luck.
Hi,
thanks for your message it really is reassuring to hear that it is possible to start and stop when necessary. I didn't take my dose yesterday or today and I feel so much better, the rash isn't burning now and is starting to fade and I don't feel dissy , I didn't have major pain anyway, a little in my fingers but like you mostly after heavy work, a little in my knee and hip but as I said nothing that two nurofen didn't solve. I'm using the moisturise toothpaste and mouthwash for the dry mouth and eye drops for the dry eyes though thanks to a tip on this forum I discovered that a hot compress works even better to relieve sore eyes, so I cant justify taking serious drugs that can cause serious side effects and even permanent health issues when I can manage without them, the specialist himself said I only have a mild case which is why I can't understand him putting me on such a high dose, and if I have had this for at least ten years and survived ok I think it makes sense to continue as I have been. My only worry, and I can't seem to find this out online, is that by not taking the Plaquenil I'm risking organ damage or if you are relatively symptom free at least sever symptom free, is that not an issue? Thanks for the support and keep well.