I wonder if anyone can answer a question I have about my blood test result, i.e has anyone had the same result and what was your diagnosis for the result.
I have obtained a letter from my doctor sent from my rhumy. It says my blood test for ana was the following: CYTOPLASMIC SPECKLING ANA POSTIVE ELEVATED. Can anyone tell me what it means and what condition you have with this result.
Now for hydroxychloroquine update. I have now been on it for 2 months and doing really well. I no long have joint pain except for my knees which is only appears when standing for very long period. All my aching, stiffness and pain has stopped in my muscle. I can now walk fast again and for long periods, without my legs feeling jellyfied, heavy and fatigued. My strength has come back in my arms legs and hands i.e I get get up of the settee, and the floor when kneeling without any problems. I can climb stairs again without problems. I can now lift things, where as before I had trouble lifting a full kettle and i can take lids and bottle tops off things with ease. My headaches have stopped, and my energy levels have increase. I no longer have a pain across my back when I take a deep breath. The only thing that remains is night sweats, they have not fully disappeared yet albeit I am not having as many , and I no longer get the feeling of feeling my pulse and heart racing with them and increased temperature. I am hoping that will improve the longer I am on it.
I am due to go on holiday in 3 weeks, abroad, I am waiting to see what affect the sun has on me, although I do try to avoid as much as possible.
So all in all I feel like my old self, Just like I did when I was on a reasonable amount of steroids.
I do not go back to the rhumy until January, let's see what if makes of this and maybe I will get a diagnosis, here hoping!!!!
Thanks you for listening and if anyone can throw some light on to the blood result I would be very grateful.
Hope everyone is doing ok
Kind regards Bev x
Written by
Daisy1991
To view profiles and participate in discussions please or .
Glad you are feeling better, but you can still have a flare while you are on it. So be very careful in the sun. Sunscreen, hats, etc. Also, if you go to the beach look for the shady places. I use umbrellas, and again, lots of sunscreen, and don't forget your feet. That is the last sunburn I had. Also, try not to get over tired. Sometimes, I flare after I travel, but then I just get plenty of rest, and sort of feel it is worth it.
I'm so pleased you're feeling the benefits from Hydroxychloroquine already, that's really good news.
My ANA was Anti centromere pattern at a titre of 1:640 and I had a positive Anti Ro and I'm still waiting for a second opinion and a firm diagnosis of something other than UCTD!
I believe that a speckled pattern is associated with Lupus so perhaps you're on your way to a firm diagnosis now too.
I've gone back on Hydroxy now but only half a tablet a day because of being so sensitive to drugs it's going to take a very long time to increase it but my better days which are usually very few and far between have gone on for maybe four/ five days with a little more energy every couple of weeks but I seem to flare inbetween.
It's really nice to hear Your positivity, it's very encouraging👍🏻
Keep up the good work and have a lovely holiday, let us know how you get on this time it'll be interesting to know if you feel better than the other times when you've been away.
In the letter to the doctor from the rhumy. He hasn't mentioned lupus at all. He said that there is nothing really typically focal of an absolute well defined inflammatory arthritis or connective tissue disease.
He also says that maybe I have got more of an undifferentiated form of arthropaty. I don't agree.
He has mentioned that maybe I have primary billiary cirrhosis but says I am not showing symptoms of it, but he is tested for it to make sure. I don't agree with that either.
He is also said he is expanding my autoantibody profile, but he hasn't said how he is expanding it.
As we said before, we talk about things in the appointment and they say something completely different to your doctor.
I think to myself what more evidence do they need. I have read lots of things and I believe that maybe mine is MCTD and i think it is lupus and mysitis and I also think that when I first started with it all, it was polymyositis and not polymyralga rhumatica as they suggested. The reason why I think this is because I fit all the symptoms for polymyositis, and because my doctor put me on steroids I think he stopped it from progressing further.
Prior to October 13 I had no sun sensitivity, fatigue, butterfly rash, joint pain, kidney problems and breathing problems, they came on after I had that strange virus episode on holiday, If that what it was.
I really can't wait to see the Rheumatologist to see what he says about my reaction to hydroxychloroquine. It has worked as well as the steroids did for me, albeit not as fast. But I have got to say my symptoms when I started it was not a servere as they was when it all started, just different symptoms came along, but it has helped with them all. I feel like I have my life back!!!!!
I am glad to hear you are giving hydroxychloroquine another try. I hope it works as well for you, as it has for me.
I am also glad you are gaining a few more days with more energy, I think that is one of the worst symptoms, it is so debilitating, you just can't do anything.
Simple tasks like walking need extreme effort when you are fatigued. I couldn't walk very far at all before hydroxychloroquine, I just got too tired to carry on.
We went for a walk in the peak district for the first time since he took me of the steroids, which was last october. Prior to the new medication, no way would I have been able to do that. It felt so good, because the going into the countryside it is my favourite thing, it is so tranquil. You certainly need to be in good health to do it because it is so hilly and uneven. It was a perfect day because it was cloudy with little sun, but warm.
Let me know if you improve further, I really hope you do. I will keep my fingers and toes crossed for you.
Thank you Bev, same goes for you..everything crossed
I absolutely agree with you, walking in the countryside is so lovely, it's so good to be away from everything and good for the soul, I'm so happy for you being able to do that, it's such an achievement when you've not been able to do it for so long, my hip and leg pains have been a bit better and my walking feels a little easier, I seem to be able to go a bit longer before the pain starts and the legs get heavy, I think since starting my physio excersises has helped although to start with they caused me so much pain I told the physio i couldn't do them but I've built those up very very slowly too and there are still days that I just feel too exhausted to do them. I miss lovely country walks, I do little tiny ones with our dog on good days and there's lots of lovely places to walk right on our doorstep, I live on the edge of the South Downs National Park (Eastbourne) so lots of tranquil places and beautiful views but hilly so like you say you have to be well to do it!
So glad you are finding it a bit easier to get around. I hope you improve more with physiotherapy and meds. These sorts of conditions ruin so may lives when you don't get the correct help.
it takes alot of effort to get motived when you are feeling unwell, I can really relate to that.
To be fair I don't know how I have managed to work some days!!! There has been times when I am on my way there, and all the time I am driving I am thinking if I get there early enough maybe I can catch 10 mins sleep before I go in, all because the fatigue and pain is so bad. When I am there I just want to lay down all day long, I have to go sit in the car on breaks when I am like that, just to get through the day, so I know how you feel, it is an awful feeling.
It is so sad that you live in such a lovely part of the country and cannot enjoy what is around you. Let's hope you soon gets some respite from your illness to allow you to do more.
I am also sending you lots of love an positive thoughts, try and stay well take care
Thanks Bev, yes I was just like that when I was working, every time I went in I would think, this is the last time I can't do this anymore and that went on for a good year or more before I buckled and went off sick long term and eventually had to give it up and that was two years ago! Looking back I don't know how I did it for so long. Anyway I keep thinking good things are to come....well we live in hope!
I bought a £5 book from Lupus UK called "Lupus diagnosis & treatment" and speckled ana is consistent with Lupus, Scleroderma, sjogrens, & MCTD ( I believe it is the most common ana pattern in Lupus).
It's caused by the presence of ENA (the extractable nuclear antigens) and hence rhemy needs to test for them individually.
I'm not a Dr, just repeating info, but think diagnosis might follow IF they find strong positive relevant ENA's. My ana is homogeneous which has no follow-up tests & hence getting diagnosis will probably be delayed as rhemy needs to follow progress of disease & see enough evidence to confirm diagnosis.
I have had this for almost 40 years, and have ANAs on an off. I seem to have a diagnosis now, but I'm always afraid the next doctor will say I have something else. To me the important thing is finding the right treatment. I know plaquenil, prednisone and methotrexate work, and so do my doctors. Now I find that anticoagulation helps, but I'm not typical for that either, but I have some of the antibodies. I do feel much better than I did in 2013 when I fell into some kind of medical wasteland. So that's what is important to me.
What diagnosis have they given you? And yes I agree, the right treatment is paramount. I think you need a DX though, so you know what you are dealing with. I understand with all these rhumy conditions there is such a big overlap within them, that DX is difficult. But in my opinion, I think sometimes the Rheumatologist overlook what you are telling them.
I have told mine for years I have weekness in my legs when I walk, climb stairs, get up from a chair and getting off the floor etc, and the same in my arms and hands. He looks at me with a puzzled look. I think, because I can walk into his surgery, he thinks i am making it up.
I would love for him to have a week in my shoes during bad times, maybe then he would understand!!!!
At the moment it is my understanding that my diagnoses are lupus-like UCTD, Sjogrens, and APS antibodies. These things make sense to me. I have had a lot of diagnoses along the way, including lupus a few times, I was told I had MS (I don't), and of course "just fibromyalgia."
If so many things have improved on plaquenil, I would think you would be proven to have some sort of CTD.
Yes, my rhumy said if I improve on the hydroxychloroquine, we might be getting somewhere. But then in a letter he sent to my doctor he said it could be primary biliary cirrhosis although I have no symptoms that relate to that!!!
Anyway I am sure the experts with eventually come up with the Dx, here's hoping lol x
I had this for my Rheumatoid arthritis, after a few months i started to have an adverse reaction against it, to the point I had itchy swollen tongue, amongst other problems, I was taken straight off it. Took a few months for it to rid my system.
I couldn't cope with the vile head pains, it affected my sight to a point of being seen by a eye surgeon, the sickness was horrendous, so I was constantly popping stemetil, my mouth was the worst, I couldn't eat or taste anything, tongue was swollen and had constant tingling pain/feelings, my skin was irritated itchy all over, it was a nightmare.
Luckily I have a fabulous amount of Dr's, nurses, and consultants, as well as my physiotherapist all on hand to help out, and they are amazing, once I stop this med, it took a few weeks to leave my system, "probably because of all the other meds i'm on" , I started to feel a little better, my eyes talking the longest to recover, still have problems now with them, and I've been off this med about 6-8 months.
think they should keep it as a anti malaria tablet
I am sorry to hear you went through all that, it must have been awful.
Different people react in different ways, I have had very good results on it.
The only thing that helped fully prior to this for me, was steroids. I also take arcoixa as and when. But as it is an anti inflammatory medications it only helped with stiffness, aching and pain in the joints. But obviously it didnt help with the fatigue, weaknesses in my muscles, headaches, pins and needles, numbness etc.
Hydroxychloroquine has helped with all these symptoms. I am willing to take anything if it works, because without life is awful.
I just wanted to make a point to you and ExtremeDuvetDaze. I get the impression that you don't see UCTD as a diagnosis in its own right. I carried a dx of lupus for over 20 years before it was revised to SLE/UCTD. My condition is worse now than it was when I had a dx of Lupus alone and my treatment is more aggressive. UCTD is not to be under-estimated - it is unpredictable and has few guidelines as to how it can be expected to behave. There is a very active UCTD page on FB where you will see how very ill people can be - some are even in multiple organ failure. I don't mean to frighten you but, as my Rheumy said at my last appt, some auto-immune conditions haven't even been identified yet so are collectively labelled UCTD.
Hi thank you for the info. I do agree that there is a condition uctd and I don't under estimate it. I understand that it is named this when your bloods are not yet showing one definite condition, I read it in a lupus book.
My problem is that I still have not been given any DX at all, they thought it was polymyralga rhumatica which now they say they don't think it is. what my rhumy does is medicates me, this controls my symptoms, and then he sends me for test which all come back negative.
I have read loads and watched lots of specialists on you tube explaining different conditions, and every single one of them say, if you are meditated with medications the suppress the conditions test will almost alway come back negative.
He has put my on hydroxychloroquine which has now started working, and today I have received a letter to go for nerve and muscles tests, when I have no longer have the symptoms.
I am greatful for the hydroxychloroquine, as I was for the steroids because both gave me my life back, but I think all test should be completed before you commence on any meds that way they can find out what they are dealing with instead of see if the meds help the condition.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
ANA blood test results
ANA Blood test & swollen glands & neck stiffness
Negative ANA, Positive DS-DNA, Elevated CRP-HS and low white blood cells
Sunbathing and ANA testing
ANA blood test
