Diagnosis ,please

[420pain]

I have been seeing a rheumatologist for 3 years now. The one I was seeing retired and I have a younger Dr. that seems to care . I was told by him that my ANA markers are consistent with Lupus and RA . I have several "active" diagnoses ,RA, PMR, Osteo arthritis, and osteoporosis, but the old Dr. would never give me a definite diagnosis. I was prescribed Hydroxychloroquine to help with inflammation. I do not want to take it! My question is ,how did you get a definite diagnosis? I am lost. Thank you.

[RosieA]

I hope that I am reading your post correctly and that my response helps you. So sorry that you are going through all this, it is very frustrating and I think that many people on this forum will have been where you are and will be able to offer lots of advice.

My understanding is that for some people their autoimmune diseases are so clear cut from clinical symptoms and bloods that diagnosis is relatively simple. Others are less so.. I started 3 years ago with inflammatory arthritis, ANA +ve but as symptoms appeared or changed it went, after 2 years, to Lupus like UCTD. Now, other symptoms are appearing that may just be part of current disease or something else. I gather that within the first 5 years the disease can keep progressing / morphing and so for some of us it does take time to get definitive answers. Funnily enough, I am in a lot of pain at present and my OH were discussing what it could be when I realised, I didn't really care as long as I was put on the right meds. I am currently on Hydroxychloroquine - I wouldn't be without it as it has really helped with fatique, malar rashes etc. I have never had any issues with it. I take in the morning with a good breakfast and forget about it until the next day.

I have taken steroids as and when needed guided by Rheumatology. In a way it is good that your consultant didn't close the door on any disease, open mindedness is a very underestimated virtue. Although, the uncertainty for the patient can be worrying and frustrating. I know I felt like my life was on hold but over time have started to accept that this is such a complex area of medicine and as long as I am receiving treatment I am learning to go with the flow.

Hope that helps a little. x

[420pain in reply to RosieA]

This does help. Thank you. I have been taking steroids for 3 years and hoped to get off of them. I am so frightened by the vision complication with the Hydrox--- I will start taking them and hopefully they will ease the inflammation and some of the pain associated with it. I appreciate you taking time to explain this to me. Blessings to you.

[RosieA in reply to 420pain]

You are very welcome. I have used this forum many times for support and folk have been wonderfully supportive. I am glad that you have decided to take them. Don't expect anything too quickly as this drug (unlike steroids) takes several weeks to build up to strength and to start working. As others have said, just have regular eye checks. My understanding is that not only are eye problems not frequent but usually (if they are going to occur) happen after years of use. Let us know how it goes best of luck. x

[OldTed60 in reply to RosieA]

what a great reply RosieA. My diagnostic journey started with inflammatory arthritis too. So true about less clear diagnosis being harder to live with - but eventually we get to the stage of accepting this. I like to think I am accepting it better now because I’ve realised that it’s not fair on me or my family or my rheumatology consultant to expect just one overarching label if we have an overlap syndrome. I think PMRpro’s advice below that each of us has our own version of connective tissue disease is also excellent.

[RosieA in reply to OldTed60]

Thank you for your kind words. I does indeed take time to come to terms with. It is certainly an exhausting journey and as you so rightly point out, not just for ourselves but very much for our families. My poor OH is the first shoulder I cry on and I am so aware of the burden I place on him- then we just open a bottle of wine (appropriate time I might add) and I instantly feel better as we start to prepare food or I am indulged and I watch him to the honours. As he keeps reminding me - this too shall pass. I say it to myself quite often and indeed it does help. xx

[OldTed60 in reply to RosieA]

You have the advantage on me in being able to indulge using food and drink. I’m not sure what’s caused the disease progression throughout my gut - but it’s meant that I’m now a size 10 where previously I was size 16-18!

I’m on a mostly nil (other than non alcoholic liquids) by mouth regime these days. So when I’m low my husband cuts me some slack on the retail therapy front - which I find similarly cheering and (bearing present food costs in mind) not too dear!

And on a similarly positive note - I find these days that I seem to have hit a state of drug induced remission with 3 grams Mycophenolate and infusions for my Raynaud’s. Even my weightloss is now stabilising at last. It is what it is - mostly damage already done I hope.

I’m seeing the U.K’s lead scleroderma prof in London’s Royal Free next month first time - paying as can’t get my nhs healthboard to pay. My own rheumatologist is delighted that this is how I’m choosing to treat myself - trekking a big distance for his top notch expertise. I’m telling myself I don’t care too much on the diagnosis he comes up with - thinking he will probably say Sjogren’s plus UCTD/ MCTD. It’s the risks associated with my rare scleroderma/ myositis antibody and related monitoring I’m looking for.

But if I’m brutally honest with myself, I’d also love a clear cut label I admit. So I did really relate to this post and even more, to your reply. I think we human beings have a need for labels in order to process what’s going on - even if it’s just an umbrella one X

[RosieA in reply to OldTed60]

Wishing you the best of luck in your forthcoming appointment and fantastic that you appear to be in some remission. Making sense of our world is indeed a life times mission but having someone on your side monitoring you carefully would be a great support and some weight off your shoulders. I love a bit of retail therapy too and have a terrible life long weakness for knitwear!! xx

[OldTed60 in reply to RosieA]

Well I can think of many much worse weaknesses than a knitwear one! X

[420pain in reply to OldTed60]

I like to know what I am dealing with so I can better understand what I should be doing. Best to you.

[OldTed60 in reply to 420pain]

Yes we all do. But unfortunately it’s not always possible. The better news I’ve been told is that overlap syndromes tend to have a better prognosis than having just the one. And treatments are all much the same anyway so try not to get too hung up on the labels. It all comes under heading of autoimmune connective tissue disease and Hydroxichloraquine might really help. If not there are plenty more you can try further up the treatments ladder.

[PMRpro]

Why do you not want to take it? It is a standard medication in lupus and also used for RA - and it is often very difficult to make a definitive diagnosis in autoimmune disorders because they overlap. It is less the diagnosis that matters as finding the right drug for YOUR autoimmune syndrome. That is by trying them, starting with the top of the list and working down it as there is no way of knowing which will be right for you. And you don't start with the heavy guns - you keep their powder dry since with many drugs they become less or even stop being effective over time. That's just the way it is.

[420pain in reply to PMRpro]

The vision issue is the reason I am hesitant to start them. Thank you for your response.

[PMRpro in reply to 420pain]

You should have a baseline eye assessment and annual checks - if it appears there is an eye problem it would stopped immediately. HCQ probably has the lowest rate of adverse effects of all the DMARDs and used with the appropriate checks, it isn't a problem.

[Spanielmadlady]

Hi. It can take years as there are no definitive tests for a diagnosis. Other antibodies tests like Ds.dna ,compliments etc can help point to a possible diagnosis. There is alot of overlap between AI illnesses which unfortunately muddies the waters and makes it very difficult diagnose.

Why do you not want to take hcq? It is often the foundation of treatment and one of the easiest to tolerate with other meds sometimes added in further down the line.the inflammation is causing damage so medication is also about protecting organs for the future as well as trying to control any inflammation now. allowed to run riot and much stronger meds like immunosuppressants or biologics maybe required and those can be a lot harder to take. Eye tests are essential before and during hcq treatment.

I dont think any of us want to take meds and would prefer it if our illness could be helped in natural ways but unfortunately thats not always the case.many of us take hcq and have done for several years ...ive taken it for 5 yrs.

All the best SML x

[420pain in reply to Spanielmadlady]

I am afraid of the side effects ,especially the eye sight problems it may cause. Thank you for replying. I will start it soon. Prayers.

[Spanielmadlady in reply to 420pain]

All meds have side effects.the only ones I had were nausea and headaches.eye issues are rare but eye test beforehand and every year will hopefully ease your mind.x

[MrsMarigold]

Hi 420. Just want to encourage you to do as your Dr. has advised. Without taking hydroxy your body is not getting any help for the inflammation inside you. I take 400 mg a day now in split doses morning and night since 2016. I get my eyes checked every 6 months. Most of us have no side effects. I am extremely happy this medication helps me. Eating nutritious foods also helps, but sadly they are not a cure. They are part of the “support team. “ MrsMarigold

[420pain in reply to MrsMarigold]

Thank you for responding. After reading posts from others and you I will start them and see if they help.

[Blue_feather in reply to 420pain]

Btw, the eye issue is very rare. Go to the optician and book yourself a baseline eye test for people taking hcq. Make sure the optician knows what the baseline test is for. Then have a yearly follow up to make sure there are no changes. The eyesight issue linked to this drug takes a long time to occur in the unlucky few to who it affects, sometimes years, so the optician will see the change long before any damage is done and you will be taken off it.

[Lucylou72 in reply to 420pain]

Hi. I stated hydroxychloroquine in December 2022 for sle lupus and sjogrens. I felt so ill I was desperate for something to give me at least some sort of better quality of life . It took a while to kick in but when it did it really helped me with my fatigue. My rheumatologist told me it's extremely rare that problems occur and to be honest I was relieved to go on it to prevent the lupus from causing inflammatory damage to my organs. At my optician appointment the optician told me he sees lots of patients on hydroxychloroquine and hasn't seen a problem from it yet which put me at ease. I'll see the optician every year and my rheumatologist said I'll see the optician at the hospital for checks but I can't remember if she said every 4 or 5 years. Hope we've put you at ease a bit xx

[420pain in reply to Lucylou72]

My RA says yearly eye checks. I do that already.

[Lucylou72 in reply to 420pain]

Yes but I was also told I'd be seen by the hospital optician every 4 or 5 years ontop of me going to specsavers every year

[dg70]

Hydroxychloroquine dampens your immune system and if nothing else slows disease progression. I have seen quite a few benefits but it took 6 months to see any change. I had a baseline thorough eye test with ct scan before taking it but I paid privately, then I go every year for a check. They said they can pick up even a tiny change in my eyes and alert me. As has been said the next line of drugs are much more powerful with more side effects. Natural remedies and diet might make a little difference but it's fighting a forest fire with a garden hose. Unfortunately we need medication. If hydroxy makes you feel sick, change brand, I did to zentiva and have no side effects at all.

[AgedCrone]

Why are you lost…don’t you feel your new rheumatologist is doing enough?

Unfortunately with Auto immune diseases it can take a long time for a doctor to put all the test results together & decide on a medication regime.

You say you new doctor seems to care,so the next time you see him, have a prepared list of questions & any new symptoms…hopefully he then will have some answers for you.

[Smudge4465]

Morning, sorry you are on that difficult path of diagnosis, it can be very frustrating. Life is never straight forward and many lupus sufferers have other over lapping diseases/issues/problems. Hence sometimes the concoction of daily meds. I was diagnosed with lupus through A&E in 2018. Was a very difficult time. I cried and panicked once they gave me the diagnosis because I did not want to take meds for the rest of my life. Im allergic to Hydroxychloroquine so cannot take it. I take daily steroids and Methotrexate.I’m not clinically qualified but would this be an option instead? I know they use MTX for skin issues in particular. MTX has long term effects like all lupus meds. You can get to a point where you are so unwell and yr quality of life is nil that it’s a case of ‘just give me whatever makes me feel a lot better than this’. Its a balance and only you can decide. I would suggest a more in depth discussion with your rheumatologist, tell him how you feel. He won’t bite! We have a wonderful NHS with very skilled clinicians but they don’t have a magic wand. Hope that helps. My very best wishes ❤️

[chrisj]

A blood test showed I had SLE and hydroxy was the medication prescribed.

My gps had been treating me for RA without a diagnosis with the drug diclofenac. I ended up with an ulcer needing surgery and am now unable to to take any sort of inflammatory meds.

Hydroxy suited me well for SLE and helped a lot with the symptoms I had. Any particular reason you don't want to take it?

[420pain in reply to chrisj]

I fear the eye problems it may cause. My Mother had Macular Degeneration.

[BonnyB in reply to 420pain]

I understand why you are worried. Please have a chat with your optician. Tell tgem your fears and why you are worried. Give medical damily history.

They will be honest, explain things to you, then you can make the decision.

I've had no eye issues personally with hydroxychloquine. Been on it 3 years. Just sickness so had to change brand to zentiva.

I really hope you get answers and are able to take the step x

[chrisj in reply to 420pain]

I do understand. I had a thorough check at hospital to make sure my eyes were safe and at my opticians. I was told these side effects from hydroxy are rare. I was taking it for a good few years until told my SLE condition was stable and the drug was stopped. No problems at all. Share your fears with the medical staff it might help you make a better decision.

Hydroxy doesn't cause macular degeneration as far as I know xxx

[JenniferW]

The problem with looking at the potential side effects of drugs is that you need to know how to balance the probabilities and humans aren't very good at that, we are bred to look for danger (like lions) and react.

The chance of eye problems from hydroxy is extremely low. Neither of the opticians I have spoken to had ever seen a problem resulting from hydroxy.

The chance of you developing nasty complications from untreated lupus is high. 50% of people diagnosed with lupus in the past died within five years. People now survive because we have medicines to treat it.

[Shadow35]

You are lucky to be able to have a treatment without a clear diagnosis. For me i have to pay doctor that just told me wait until it's worst. Sometime i have difficulty to walk or bend because i'm so stiff and now i stard having puffy finger. One can bent most of the time and nobody think to make the link or at least try a treatment. I also start to react to sun in just 10-15 min. And sometime don't have the energy to cook or do anything for a month. I may have to wait around 3 to 5 years the doctor told me to wait to have a diagnosis and a treatment. So if i was in your shoes i would try almost anything to get better and have a bit of my life back.

[420pain in reply to Shadow35]

I hate that you are suffering with little to no help. Seems they could at least prescribe some steroids? Bless you.

[Shadow35 in reply to 420pain]

This morning i just saw a plastic surgeon for my hand and he finally gave me a paper for a rhumathologist. It's weird to be happy to be sick. Because sometime the symptom disappear the day of the appointement.

[RosieA in reply to Shadow35]

Don't they just! Like toothache stopping the day you go to the dentist. I find the child in me also only describes how I feel on the day as though all the agony I have felt has gone never to reappear (I should wish)! Am learning to control this impulse!!

[Brychni]

Hi there 420 - I can echo what RosieA has said below. Very similar story. I used to get very frustrated by it but a few years down the line and I have a greater understanding of the underlying issues and treatment.

I am also on hydroxyc. Started with Inflamatory Arthritis diagnosis that rheumatology were hoping to nip in the bud. During that time I had a red herring with frozen shoulder that went on for nearly 2 years but has now resolved thanks, mainly to the excellent physio I had, and had I suppose what have been flare ups in various parts of my body. Always readily dealt with by taking steroids or Etoricixib.

The aim is to stop disease from progressing and although I have bad pain phases, over all I think they hydroxyc. has done exactly that.

My diagnosis has also changed slightly to Mixed Connective Tissue as I have antibodies, Raynauds and hypermobility. It's almost like a pot pourri of several different autoimmune inflamamtory conditions and I have a little bit of each! The antibodies cause blood clotting so I take an aspirin every day. as I researched all these issues I learned that hydroxyc. is the first step in treating most of them. compared with other DMARD drugs it's quite gentle and I have had no side effects or issues with it.

[MrsMouseSJ]

I take Hydroxychloroquine and was quite reluctant at first, for a couple of reasons. It gave me various low grade symptoms initially eg an appalling taste in my mouth and nausea, and I had to phase it in over a year to the point where I could take it daily. Then there was the potential for the eyes to be affected. However, 9 years on, I am so glad for this medication which has helped me enormously. And which has stopped me having to take steroids.

In terms of managing the potential ocular risk, as blue feather suggests, get some baseline eye tests done. And then return to the same optician annually (unless something of concern arises in between, then go asap) for checks. I now also pay for an annual OCT scan, which is inexpensive at a very well known high street optician. This gives an excellent view of the eye and enables early detection of certain issues. Not being an optician I shan't attempt to explain it, but Google will provide you with the relevant details.

Hope it goes well for you.

[Poshcards]

I am so sorry to say this, but why say about all of your symptons, if you are not prepared to take the medication offered to try and solve your problem, I am 30 years and over with hydroxychloroquine and no end of other drugs, that none of us like to take, but take we must to get through life!