First appointment with rheumatologist

[Sarahze]

- Not sure how to feel. First appointment with rheumatologist, who was very pleasant and we had a 45 discussion. Seems to think I definitely have lupus with MCTD. However has said that he doesn’t think the symptoms are bad enough to be treated with either steroids or hydroxychloroquine as the medication is likely to give me more problems than the lupus. I have painful joints, fatigue and a pleural effusion and I continue to work which is immense effort at the moment as I’m so tired. He said he’ll keep a watchful eye and then if it gets more aggressive will consider treatment. Any one been offered any medication that helps with mild symptoms of lupus? Any alternative medicine you have tried to help that you would recommend would be appreciated too.

[Maddymay65]

Hi sorry you are struggling , it is frustrating when you have symptoms and doctors won’t prescribe anything. I find regular painkillers really help, also a regular routine , and I know some people will disagree but when I was working one day a week I had a nap after work on a shorter day . I also reduced my hours I am not sure if this is possible for you ? so I did say 2 in then 1 day off , this really helped the fatigue. I also saw a occupational therapist who taught me out about pacing so I worked out which activities were a “ red flag’and increased fatigue. Your gp may be able to refer you. My red flag is hoovering I now delegate if I can and I invested in a roomba , I decided my health is more important that hoovering, which is an absolute killer . Hope some of that helps. I also looked at my diet to see if any foods were exacerbating my condition , I am now gluten free and dairy free I believe this helps the inflammation. Take care M 😊

[Tiggywoos]

Hi Sarahze so sorry you’re struggling we can all relate 😞.I am a tad confused though as to why rheumatologist hasn’t started you on hydroxy . When are you having a follow up ? I’m sure you do but make sure you keep a diary and take photos as they help so much if things progress /deteriorate.

Food wise I went gluten free years ago for severe endo .. helped massively with bowels. I also avoid a lot of “red” foods and garlic as make rash and joints worse but it’s a very personal thing .

Don’t get me started on fatigue 😳🤦‍♀️.. sadly nothing helps , not even rest really . I’m sorry to sounds so negative . When I’ve taken low dose steroid it gives me some life back but currently only taking hydroxy.

You’ll get some brilliant replies I’m sure

Take care and most importantly try to be kind to yourself every day xxx

[LarryNapier]

Hello, sorry to hear how much you are struggling. There is nothing worse than a doctor not listening to you. Fortunately, my consultant when I was diagnosed was on the ball. I was given diclofenac to help with my swollen and painful joints. The only thing I got with this was bad stomach side affects some days. I was put on Hydroxychloroquine and an aspirin a day for a short time then my brain was affected so I was given chemo treatment of cyclophosphamide and then put on azathioprine once the chemo had finished. I went back on to Hydroxychloroquine again after my chemo and steroids. After about a year they took me off both azathioprine and steroids and now my lupus is kept under control with just Hydroxychloroquine and an aspirin a day to help my sticky blood. Touch wood no flares since diagnosed 7 years ago. My joints have been fine too . Fatigue can be a nightmare some days but my rheumatologist discovered by B12 level was low. Might be worth them checking that out when doing your bloods. I really hope you get the answers to your issues. ☺️

[Hamptons]

It sounds like a good first appointment, sadly things take time. When is your next appointment? Doctors need to hear impact, we tend as patients to play this down not wanting to sound weak or moany. It does seem strange that he did not prescribe hydroxychloroquine as that is the drug for milder symptoms. However it was day one, he is learning about you and your symptoms. He is right drugs are great but they bring their own issues.

As advised keep a diary of times the fatigue impacts you and how many days, photos of the swellings and other fun bits with dates and duration.

My OT saved my life, mentally and physically. You gp can refer to OT so I would ask. Pacing information can be found online too.

It is about knowing your beast, Lupus effects everyone differently. Learn to look at triggers for fatigue, notice patterns. A food diary may help you to see trigger foods. I eat a low histamine diet which means I can eat a reasonable diet but it did shock me how many common foods irritated symptoms. I am dairy free now but that was Covid not lupus induced.

Once you know your beast you can manage better, if I do day trips they are Saturday then I rest Sunday. I have a cleaner so I don’t do that on top of my working day, she is amazing and will iron and change bedlinen. Which is a fabulous when my hands are bad. I go to the gym and do light exercise to build stamina, I found it helps with fatigue in general not if I am in a flare then it’s bed all the way.

You will be your best doctor. Notice what you did differently in god days. Supplements help, I have a big bag I take each day. They make a difference.

Good luck

[KayHimm in reply to Hamptons]

Great point, Hamptons. Unless it is something that clearing needs attention like kidneys doing worse, some doctors like to get to know you before prescribing. Yes, being specific about how the illness affects our daily life is so important.

Even Plaquenil has side effects, so unless it is classic lupus, rheumatologists can hold off. I have never been on Plaquenil with UCTD.

Kay

[Cowsaresweet]

Sorry to hear that the advice you seem to have received is to continue struggling on.

Hydroxychloroquine I was led to believe is not that toxic and so I am surprised you haven’t been put on that. I am on it and prednisolone.

I agree with ‘Hamptoms’ you need to not just say your symptoms eg pain around my knees but the impact it is having on your daily life. I have gone from someone who was doing long distance walking and very active to being just about able to get around the supermarket. So yes if you see me walk into the appointment I look ‘fine’.

Photos certainly help and sadly I think going to your GP when you are suffering also helps as then they are more likely to push for you to get advice / help.

The fatigue is very difficult, if possible change your work hours and be rigorous with your diary. I now try as far as possible to book only one thing in a day, as even going to a friend and having lunch takes it out of me. If anyone offers help, say ‘yes’. Have some easy meals available so if you are having a bad day you can use them.

I have gone gluten and dairy free and I do think it helps.

Finally feel free to say ‘this is rubbish’, don’t keep it all in. Rant on this forum, sob with your good friends and family. Yes you do have to adapt but part of that is accepting the situation and that is tough going.

[Mollymaid]

Sorry to hear you are struggling I think you should diary your lifestyle at the moment and present the consultant with your account at next appointment. Reading through the replies regards diet I do think this plays a big part… I’m waiting for a celiac test, have been for a while and I’m going to bring it up at my appointment next week. A referral consultant in London looked at my case and said he thought flares and symptoms were diet related and recommended the test. I’ve done a few experiments and had several days on for example white bread cheese and processed rubbish and felt awful with flares etc. As soon as I cut out gluten I feel a lot better.

Good luck with ongoing treatment plans 🤗

[MrsMarigold]

Hi Sarahze. I agree with all comments above. Especially as to why he didn’t at least prescribe hydroxy because it is important to decrease inflammation. I would try for another appointment and ask? For this frontline lupus medicine. Best, Titters

[Roarah]

HCQ is a milder first line treatment but long term use sometimes has eye toxicity which makes some doctors wait until absolutely necessary, you know the whole benefit vs risk thing.

For me yoga and walking really help my joints. Meditation and good sleep hygiene really help my fatigue and I honestly believe getting my vitamin D up and a high fiber diet has helped lower my high antibodies and my inflammation marked are now incredibly low.

Three years after improving my life style regimen I am on no DMARDS.

I hope you feel better soon.

[KnitSewPurl]

Hi Sorry to hear about the sufferings afraid we are all in the same boat with this ailments when it comes to lupus. Be strong ,if your faith in the Lord is strong then trust Him to pull you through each flare . As for diagnosis ,I was diagnosed with mild SLE with bronchiectasis and heart valve leak. I also have severe migraines (stroke like)prior to this diagnosis which they think is not link,(Under different consultant at a different hospital) this is now under control with meds. Also we found that once I started on the hydroxychloroquine the migraines seem to cut down to almost 0 some months it has been years since I had serious migraines until recently I have been having multiple ones which meant that there is an issue ie infection somewhere in my body.

Treatment given was Hydroxychloroquine and Arcoxia.Also when I was diagnosed during that time I could barely walk and was tired all the time had psoriasis on scalp. swelling on my ankles and knees. very slight rash on my face my ana was positive and CRP was raised .

I get swelling with heat, pains together with lesions all over my body. I cope with painkiers twice a day and distraction of sewing /baking /knitting, trying taking up something to help you focus to take you mind off the pain. I used to work part time because of Covid where I work I did not feel safe to go back it was zero contract hours. Initially it will be difficult but it gets easier as time goes .We have gym bike at home which I use occasionally when I feel well to use it is useful to stretch those muscle and exercise them because we don't use them as much when we are in pain all the time. As walking is good as well like around the block when you feel up to it.As the Rheumatology clinic helpline , I have given up phoning them and telling them about it. As it makes no difference when I ask for a depomedrone because I was in so much pain once shouted at by a nurse for calling . So I cope with the pain and put up the flare up I have not spoken with my consultant for over a year. I now have pains in the back of my right side due to multiple urinary infection. praying that it is not due to my SLE . Being investigated now privately.

As for diet , I avoided all things contain garlic and mushrooms and not add anything to the cooking garlic and mushrooms. it has helped tremendously cut down alot of the swelling ,redness / heat , it is quite noticeable when I have anything with it. I feel quite ill unable to sleep due to body being very hot and starts to swell especially the fingers and pain increases. It is like an allergic reaction to it. Before being Diagnosed with SLE I was able to eat garlic and mushrooms absolutely love those two ingredients . Ask my family they will tell you how much I will add it into my cooking now it is like poison for me.

So we cook very thing at home also I eat alot of fish and chicken once a while we have red meat. once awhile pastry but mostly our diet is potatoes /rice and lots of soups and bread. Instead of garlic I use ginger as my substitute and onions.

Hopefully you will be able to find out what food it effecting you or makes your flare worst. Usually you will know after a few hours like half a day . Depending on when you take your food. keep a diary of what you eat so you know what you are eating if it makes you feel worst, suggestion is to To only try it when you feel well because you will not know it now when you are having your flare . do it when you don't have a flare . So you can rule it out .

Also , I find that when I get stressed even the slightest it brings up the flare and lesions. Infection is the worst enemy of all. you will know if you have an infection some where in your body because you have a flare and you are in pain constantly. and it takes time for one's body to return to" normal self " after the flare.

Apologies it is long but this SlE is not really a straightforward illness . I have had this over 12 years and still learning to coping with it.

hope you will get some form of treatment soon .

Also sleep is good 😊, I slept alot in my early stages like 16hours some days. if your body says to sleep you sleep don't fight it.

if you want to chat at any time we are all here for you.

xxx

[KnitSewPurl]

oh yes thing that contains high processed sugars and salts ie biscuits and crisps. therefore advice cooking your own biscuits and no crisp until your flares/SLE are stable. I found lightly salted crisps are the best - high end types , only once a while to be eaten- not for bingeing everyday. As they say very thing in moderation. and know your body. make sure you take multi vit that has vit D in them to top up . These. also needs to be checked regularly.

[DonnyJM]

I’m currently not on any medication and coping but when on hydroxchloroquine it worked well and had no obvious side effects.I’d go back and explain how you are not coping and need something. I found diclofenac a NSAID really helped with joint pain

[Rose_80]

Hi,

I really can empathise with your situation and think it’s worth discussing again with your doctor or a different rheumatologist explaining how debilitating it is for you.

I have undifferentiated connected tissue disorder with symptoms of lupus and RA. More recently I was found to have severe histamine intolerance. I’ve taken steroids to manage flare ups and hydroxychloroquine. I found that hydroxychloroquine helps significantly with joint inflammation and my cognitive function. I still struggle with fatigue particularly from early evening onwards. I find that I need more rest generally and even with the medication have to watch that I don’t do too much on good days, which could result in days of feeling overtired afterwards.

I am able to exercise now but it is limited to restorative yoga every other day and walking and that is enjoyable and I’m grateful to be able to do it considering the pain I was in. I struggled to climb the stairs, unload the dishwasher, typing was painful before. I would come home from work and immediately go to bed and ended up taking more and more sick days. I’ve also switched to a low histamine, low inflammation diet which has helped energy levels. But this all takes time to become effective and feel the benefits.

My rheumatologist told me that Hydroxychloroquine can take 10-12 weeks to feel the positive effects but I noticed a difference within 4 weeks. The risk of eye damage was something I was made aware of at the outset and I have an annual check to make sure there is no risk. For me, a downside of taking hydroxychloroquine has been that certain antibiotics are not compatible with it. However, I am susceptible to infection as a result of steroid use and this has complicated treatment for infections in combination with being on hydroxychloroquine. I agree with the other comments on your query, that it is generally seen as a mild treatment. I would explain again to your doctors just how debilitating this is for you and the impact it is having on your day to day life. It is worth exploring again.

I wish you lots of luck and hope you begin to feel better. Be kind to yourself and get lots of rest.

[MrsMarigold in reply to Rose_80]

This sounds exactly like me. Especially theWatching how much you exercise. All the research I’ve read says hydroxy can affect

The eyes but it is very rare. My optometrist

Said in 25 years she has only had one case.

Covid has causedcalot of us, me included

To delay this very necessary appointment

Here in US is every 6 mo

[KayHimm]

Sounds like a doctor who listens - so important. Just be very specific on your next visit about how your symptoms affect you and you can decide on a course of treatment together.

Two people I know on the forum with pleural effusions are on steroids in addition to Plaquenil. You might want to ask specifically what will help each symptom. That could be one of the issues with you.

Good luck and check back in.

xk