[Surferboy]

I had my appointment with another rhumy this morning.

He was quite thorough and answered most of my questions. But as I was so incredibly nervous and seriously not thinking straight I forgot to ask him so many questions. Also, I think he got a little annoyed with some of my questions :blush:

In the end he diagnosed me with "very mild lupus". He was unsure whether there was any organ involvement, but he did notice that my knees were very swollen. He also said that i have discoid lupus on the scalp.

He has suggested I go on a week long course of steroids (forgot to ask him why), and then to begin 400mg plaquenil everyday.

I was hoping that I had been misdiagnosed, but now that I know the facts I'm going to try and get to fixing myself as much as I can

A quick thank you again to all those people who have supported, advised and put up with me these last few weeks. Also thank you for all the shoulders that have been offered to cry on

 

[ALWIN]

Hello there

I am sorry you have been diagnosed with lupus, but glad that at least you do have a diagnosis so you can learn how to manage yourself in the best way.

I have mild SLE and take 400 mg of Plaquenil daily with a few anti-inflammatories, stuff to protect my stomach from them, etc.

It took 10 months after starting plaquenil before i noticed i was able to do more with less tiredness, and i am less achy these days. I did not think it was working, but i persevered and it has helped me a lot. I hope you get the same effect.

After the initial shock of being diagnosed I feel a heck of a lot more comfortable than i did a year or so ago and am now able to do quite physical work, so long as I pace myself, without any bad flares. I dig and build walls for a living - part-time! At one stage i was also back to fitting in a swimming session 3 times a week too.

A lot of people on the boards swear by the effects of a short course of steroids to help them get over a flare, which I imagine you are in. Lumps in the groin and armpit region are often enlarged lymph nodes and this is usually an immune system response. But i would still ask my doctor why they were there to reassure myself they were linked to lupus and to help me understand my own disease process better. We all have different things going on.

My SLE is less marked than yours since i have never had enlarged lymph nodes and whislt i have joint and muscle pain there is rarely any external evidence of this in terms of swelling. I just ache and turn into a forgetful sleeping machine with mega migraines without treatment.

It is good that your rheumatologist has described your lupus as mild .... meaning no organ involvment ... but few of us with 'mild' lupus find it a mild disease when flaring.
In fact, i struggle to consider anything too mild if drugs are required to keep you functioning properly. Very good that you do not appear to have any other organ involvment though. Long may it continue and here's hoping you get good effect from your new drugs!

PS I started straight away on 400mgs daily, but did not read the pack instructions and took both tablets at once. This caused problems with my 'stomach' (bottom!) so please do divide the dose! People are often started on 200mg and build up to 400mgs to avoid this.

Happily, my stomach problems did cease, and I do not get any side-effects from taking plaquenil now. Well worth persevering.

Take care.

 

[Maia]

I'm glad you got in so quickly to the second rheumy! I try to bring a list of my concerns/questions with me and sort them from what I really want answered at the top to what is relatively unimportant and I don't mind not discussing at the end of the list. Otherwise, I can get flustered like you and/or forget. This is after over 6 years of experience

I can't help you with the discoid lupus questions... I've never had that. Hopefully others will be along soon with some answers for you. Certainly there are some good websites out there on the topic you could search for. If there isn't much improvement in the scalp sores in the coming weeks, you may want to seek out a dermatologist. I imagine they are the ones really in the know about treating discoid lupus.

I manage my lupus with Plaquenil only at this point, with occasional use of prednisone from a few weeks to a few months (occasionally more). When the pain gets really bad, prednisone can do a lot to reduce it and it also will reduce swelling. I think it's definitely worth a shot in your case.

Good luck!

 

[Katharine]

Wow, sounds like a good rheumy!!! He answered all your questions....my...what a chap :rotfl:

No, sorry, seriously...I'm glad it went well and that you got lots of answers.

It sounds like he has put you on prednisolone to get you over your current bad patch and then hopefully let the plaquenil begin its work (do remember that plaquenil takes about 3-6 months usually to kick in properly). Don't expect instant results. Sometimes a short sharp burst of prednisolone is enough to bring a flare under control and it may well be in your case as it came on rather suddenly too (many of us were ill for years before getting diagnosis).

Hope you're soon feeling better,
Katharine

 

[Surferboy]

Thanks for all the replies

Alwin, digging and building walls - wow! If you don't mind my asking, how old are you? If you can do that it gives me nothing but hope

Also, regarding the aching joints - I thought that ALL aching joints were accompanied by some kind of swelling as the aches come from an inflammation of the tissue??? Does anyone else have enlarged lymph nodes? IS this something of a major worry?

As for "no organ involvement" - I do have protein in the urine so I'm assuming that there is some organ involvement

Maia, unfortunately I had to go private to see this rhumy. Right now I dont even want to think about going into the story about my NHS rhumy department!! To say they don't care in the slightest is a massive understatement!

 

[Clare.T]

Hello surferboy
Well, it would have been amazing if you had been de diagnosed but it's good to have confirmation. I have been off line for a few days so maybe I missed some info but could you clear up what doctor this was? Is it another in the NHS, in the same department/hospital that first diagnosed you or a private one?
I did notice that you said you had lots of questions and mentioned three pages worth at one point. For the record, there is rarely time for lengthy detailed questions. Part of becoming an expert patient is to realise what questions and topics are important given the time limitations. In a first consultation or follow up the most important questions are about medicines - what are they for any side effects to look out for, prognosis in a general sense, next appointment, what to do in emergencies or problems that arise - whom to contact.
Take notes and make notes of the crucial points such as the names of medicines.
So, when is your next appointment? Will this doctor be following you?

Prednisone is a corticosteroid, a fast working anti inflammatory very useful short term for immediate relief of some symptoms and essential long term for certain lupus related conditions, but only if absolutely necessary. You might need to be on it longer than a week until the Plaquenil starts kicking in.
The Plaquenil will take several months to have full effect although it might start helping skin problems within a few weeks. It is all some people need to keep the disease under control, along with a NSAID and occasional short term Prednisone for a flare. You need to see your GP to let him know of these developments.

All the best - I hope you will soon be feeling much better


Clare

 

[Surferboy]

Hi again Clare.

The Dr I saw today was a private Dr. My NHS Rhumy department seriously do not give two hoots about their patients. But I dont want to go into that right now. I'm in too chilled a mood But will put up a posting in next couple of days. It truly hurts me to see the NHS in this light

And LOL at the 3 pages I managed to cut it down (and no, not by making my writing smaller) to 1 page.

 

[sjink]

Hi again
Glad things are getting clearer for you.

I have protein in my urine all the time and have mild SLE with NO organ involvement. It is not a prime indicator for organ involvment, just something that rheumy's keep an eye on "just in case".

Alwin is right that it does not feel "mild" when in a flare and taking lots of medication but that is the name for non-organ involvement SLE!

My joints ache a lot of the time, although it fluctuates from hardly bothering me to very very painful, depending on how much I do, the time of the year etc etc. These joints do not always swell. Inflammation can happen without swelling in my case. My ankles and wrists are very painful today and there is no visible swelling. My finger joints get puffy in a flare and get little nodules on them which die down when the flare dies down.

Lymph nodes can be enlarged when you have a slight infection or when you have a serious illness, so they are not, I don't think, diagnostic of anything very specific on their own. Mine in my neck are usually enlarged when I have an infection or am in a flare. Swollen lymph nodes are quite common with lupus I believe.

All in all I think it is now time to give the steroids and then the plaquenil time to work. If the joint pain does not ease with the prednisilone then the next thing you could try is a NSAID I guess.

So pleased you got some answers
Sara
x

 

[Maia]

Just a quick answer about the swelling question: in lupus very frequently the pain is out of proportion to the amount of visible swelling. By this I mean, it is fairly common to have no visible swelling but be in a lot of pain. I only 1-2 times have had or had a doctor detect through joint exam swelling, but am almost always in some degree of pain varying from mild to pretty bad.

 

[ALWIN]

Hi again,

I am so glad others have mentioned that their joints do not always swell ... was beginning to feel a fraud ... again!

Let me tell you how difficult it is to explain to a doctor that your joints/muscles hurt when there are no visible signs of inflammation ... it is no fun.

Most of my big joints hurt when i flare (knees, hips, elbows, shoulders - thoracic spine, elbows/shoulders can make me cry, by the way). The only places you can see redness and inflammation are my knuckle and finger joints. They are usually the least of my concerns by the time i seek help. I seek help when my pain killers don't work. My flares usually start to subside the day i finally get an appointment, so you can see they are now fairly short-lived.

Anyway, I am lucky in that I have flared little since medication kicked in, as i said. I cannot stress enough how important they have been for me. I had to give up my career before I got proper help - hence learning a new skill and starting over on a self-employed basis.

Today, however, I am having a snotter of a day and have returned home from work. First time in months. That's what i do - i down tools and go to bed, take it easy for a couple of days, sleep, then start working again gently with lots of cups of tea. I see nothing wrong with coming home after 4 hours work and going for a nap. It works for me. I am generally more comfortable with my life style/work blance than ever before. Nobody could have told me that 3 yeats ago. I would have thought them cruel and ignorant. Really, deep down, I thought i would never be ok again.

There is plenty of hope. I am 44 years old, 5ft 4inches tall and female. Hope indeed .. but we are all affected in different ways.

I use my work to prove progress to myself. What ever is going on in my body i can always point to something i have made which demonstrates my usefulness - my middle finger up to the condition i am in. if i am having a bad day i think well if i dropped ead tomorrow i have left my great big signature all over the place in the form of walls and gardens that should last for years.

Plenty of people on here have been frank and made me get real with myself along the journey. And no doubt i will rely on them to do it again in the future. I try to be honest with myself. If i do not have enough spoons (see Spoon Theory) I don't try to battle on ... I have no spoons ... no work happening today - full stop.

So it is no cure, but there is a marked improvment. I would say i am comfortable enough and have enough energy to work 20 hours per week, run a home and family in a ram shackle kind of way. I think i would become ill if I worked full-time, and anyway even if i was 100% fit, i would not be strong enough to do this for 40 hours.

One of the most important things is none of my family question me if i choose to go to bed, and I avoid people who don't understand how i can lug boulders one minute, then not get out of bed the next.

Anyway - rambling, so off for a nap!

Take care.

 

[Surferboy]

Hi again folks.

Alwin, thanks for your detailed reply. Reading how determined you are gives me so much hope Thank you.

Also, I saw my GP this morning. I don't want to bore you all with too much detail as most of the talk was pointless. BUT when I told him that my rhumy was going to write to him to get him to put me on steroids he kind of got irate. It seemed that my GP did not believe for one second that I should be on steroids - not even for one week!

He reckons that the only reason my rhumy suggested steroids was to lessen the swelling. But my GP reckons that this could be done with plain old painkillers!!!

Once again, I'm confused.........

 

[Katharine]

Hiya,

I'm going to be blunt again - must be my week.

Sounds like a change of GP is in order. Your GP will be invaluable inbetween rheumy visits. There is no way you can continue with one that will belittle your disease or needs.

Katharine

 

[Surferboy]

Tell me about it Katherine. My wife and I have been contemplating changing GP for many many months (well before my diagnosis). And I think this will most probably be the final straw!!!

 

[Okie]

fell thru the cracks because of a poor GP

Hi Surferboy
I can't tell you how important a good GP is--I had lupus for many many years and my GP was negligent and careless!
I saw every type of specialist for every single flare --nephritis,severe
(ITP--lost alot of blood),had several transfusions,sclerederma,hypothyroidism,unexplained rashes etc.etc.etc.--many pointed to an auto-immune disease but I never saw a rheumatologist until I switched family doctors and she clued in!!!
Get another doctor!!!
I now see a rhematologist who specializes in Lupus and have a very good family doctor who co-ordinates and oversees all my specilaists records,medications etc.
All the best and changing is sometimes life saving!!!
Okie

 

[JoD]

I did notice that you said you had lots of questions and mentioned three pages worth at one point. For the record, there is rarely time for lengthy detailed questions. Part of becoming an expert patient is to realise what questions and topics are important given the time limitations. In a first consultation or follow up the most important questions are about medicines - what are they for any side effects to look out for, prognosis in a general sense, next appointment, what to do in emergencies or problems that arise - whom to contact.

Clare

One thing I've learned is that email is a powerful tool with doctors who use it.
I started to do this for my son who is 13 and has multiple disabilities. 7-10 days before an appointment I would email the doctor with a list of requests ( need a 'script for med renew, new wheelchair etc) as well as any questions I have. If there is a new treatment etc I've heard about.I will email the web page or scan in a report that has set me on the road of inquiry. That way, the doctor has a chance to read what I read and be better prepared to answer the questions. No one likes being blindsided.

The doc will print off the email and bring it in to the exam room and we go over it point by point. Saves a heck of a lot of time. I don't forget anything either.
Joanne

 

[sjink]

Hi Surferboy
Lupus UK do a GP information pack about lupus and I think your GP needs one. You can talk to lupus UK about this and see if they have one to send him? i think one went out to every GP practice but if it went to him direct it might help.

I agree though that it is time to change your GP if you can.

Sara
x

 

[KarolH]

Alwin,

I loved what you wrote above this post.

One question though...............what is the Spoon Theory?

 

[Clare.T]

Karol

The "Spoon Theory" is a clever way of explaining to others what daily living with lupus can be like. It's also a good tool for pacing oneself

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
_________


I don't know if LupusUK has a more recent doctor information package, but in 2000 they produced a "GP Guide to Diagnosis" which is very useful to study oneself, and I think a copy of that was sent to every UK GP practice. It costs £5.
It mentions photosensitivity, in the skin chapter saying that photosensitivity is an issue for 40% of lupus patients and gives guidance on UV protection. Sunblock and cosmetic aids are mentioned as supportive therapy in the management description. The 40% might well be a conservative figure.

The most obvious point to make is that both photosensitivity and two photosensitive lupus specific skin problems are important enough features of SLE to be on the list of criteria. ( It wasn't meant for diagnosis only classification but that is irrelevant in this context. And by the way, the third sort of lupus specific skin, subacute cutaneous, should be on the list too)

On the GP question, I have a slightly different take. Very few GPs are lupus literate and in fact far fewer rheumies throughout the world than you would imagine are too. They might only have a couple of afternoons on autoimmune connective tissue diseases. There's a world wide shortage of rheumies, as it isn't considered a glamourous or lucrative speciality.
It is unrealistic to have too high expectations.

Under the UK National Health System it is often hard to change GPs and might be impossible outside of major conurbations, when GP practices tend to be much smaller and fewer with virtually no choice. Accessibility can be a problem too in suburban and rural areas poorly served by public transport. This true in most countries. Parking can be a major problem in many places.

When there is a choice and you can find a GP who will accept you on the practice list you would then have to make sure you would get better service than from your existing GP. Better the devil you know ( and who knows you) sort of thing. If in all reasonable respects your GP practice is OK- there is far worse than not knowing about lupus- then focus on educating him and building up a partnership.
You may be the first lupus patient he has had: my GP's practice has only two lupus patients in over 6,000 and that's in a racially mixed population.

Important factors are: how long does it take to get an appointment, can you book a double appointment, bearing in mind that the usual time allowance of each is 10 minutes, does the doctor listen and does she show concern & care, is she and the reception staff courteous, generally sympathetic and helpful, how willing is the GP to refer and liaise with the specialists; is the average waiting time acceptable.
If you don't drive, how will you get there, is there a cab service that you can afford if need be.
if there are other partners in the practice, what are they generally like if you need an urgent appointment and can't get to see your usual one.

I'd also comment that many doctors feel threatened or at least insecure when faced by proactive and well informed patients. They are not used to feeling challenged. It is very important not to let the consultation become confrontational.

Since the GP is the only access to specialists on the NHS, a 'good' GP is essential. Think carefully about decisions to change: you can easily be out of the frying pan into the fire.

Good Luck
Clare

 

[BigSis]

Hi Surfer,
I'm afraid I agree with the others in that a change of GP might be in order.
It's not so much a lack of lupus awareness that I find worrying.......after all that is common......but his apparent unwillingnes to work with your rheumie.

Sound out the others in your practice. There may be another doc with a specialist interest in rheumatology. Otherwise just find one with a more sympathetic attitude and educate him/her.

Good luck

 

[Surferboy]

There is one very good GP at the practice. But the only problem is that he works there in total of 1 day. So to get him can be rather difficult. But I'm hoping that now that he knows my condition he may make an exception to seeing me no matter what