[greenhaggis]

Hi everyone!

Well I went to see my Immunologist yesterday which lasted 30 mins. On his part he only asked a few questions and gave me my bloods form to get done and issued a referral to a Gastro Consultant so that I can have a camera exam. The new Anti-inflammitories prescribed Etoricoxib 60mg (which I later found I could not get hold of as a withdrawn drug), they suggested to try Arthrotec 75 as an alternative (luckily I was not pregnant before taking this as I was never informed of risks, although I read info after and the enclosed sheet. An increase in Plaq. from 200mg per day to 600mg over 2 days increasing after a month the 400mg per day! Said he did not need a urine sample for testing.

Bloods taken to be tested for:
FBC
ESR
Lupus anticoagulant
Liver
Bone
Thyroid
Renal (Na, K, Creat, Urea)
Sirum Iron
Ferritin
Cardiolipin
C3/C4
ds DNA

I did not manage to get much said in the 30 minutes!!! I told him no change on Plaq and asked him why I was on a low dose! He answered that in UK they start on 200mg and that is usually enough and only in USA do they start on 400mg!!!!! He was surprised that I had no change with Plaq. except of course worse symptoms and acne to boot! He asked how I got on with the Pred before Christmas and I told him it did not help except to give me the side effects!
B12 - told him GP results were borderline low. He said its not necessary to test for another 12 months and signs of problems with deficiency do not appear for a very long time!!
I did get in that I recently had Shingles on one side of head then followed by a similar burning sentation across another part of my head that could not be related to shinlges - he did note in file but no further comment!
I asked about ance medication and how it interacted with Plaq. as my GP wanted more specialist advice. He said no anitibiotics for now just to try a topical cream which he will advise GP on.

I did not have time to bring up: Swollen painfull glands, under arm pain when exhailing out, funny bending fingers, jumping middle fingers, thumb jerks. More swelling/heat/stiffness in hands. Is my back pain a SLE problem and why have I not had an x-ray in 20 years! Have I been tested for Raynauds and Sjogerns as I have the symptoms/signs!

All in all I know this was not a good appointment as I need more than just bloodwork testing and more care for other problems that have existed before my diagnoses of SLE. The Immunologist still never explained what Lupus was and what to expect! My old Rhuem will not see me as he does not want to tread no the toes of the Immunologist!

I am just glad that this site is hear to provide useful information and support!

Thanks everyone!
Love Lesley

 

[LolaLola]

Sorry to hear that you did not get the support you deserve. Being newly dagnosed you need support.
x Lola

 

[karen.w.]

Hi lesley

I am also sorry your appointment did not go too well :sad: :hug:

unfortunately It is easy to forget everything you need to ask & 30 minutes feels like 5 minutes when you are in there.

when is your next appointment lesley?..can you speak to your old rheumy again regarding him treating you instead?maybe think of an excuse?

lesley I can relate to how you feel about the forum,I feel this is my main source of information,advice & support!..sadly my rheumy is way down on the list

take care..karen x

 

[elisabethm]

hi lesley if you were in scotland i would think that we had the same rhumy as i got more or less the same answers you got the only diffrence was i got the xrays done on hand wrists feet hips pelvis but still had no word about the results how frustrating when we know there is somthing not right with our own body

 

[greenhaggis]

Thanks for all your comments!

I am off to GP on Thursday to ask for referrals a Deromotolgist Consultant,
Orthopeadic Consultant and Neurologist as I don't seem to get the full care through Immunologist and can't get back to see the Rhuemi!

I don't see why I can't get seperate referals for problems that have been ignored or never followed up on - they all can't be be down to Lupus!

Lesley

elisabethm - its could be just the Scottish connection I was born there many moons ago!

 

[Maia]

And even if they are due to lupus - that doesn't mean a rheumatologist or immunologist can handle them all. Many here have several specialists involved in their care! I hope you have better luck with the GP giving you the time - & the referrals!

 

[Primrose1960]

Specialists apointments

Sorry to hear your apointment didnt go so well.

I find its like preparing for an exam and I have to cheat and write things down.

Some specialists are great and make you feel at ease others are just rushing you through as you are another number on a page and they make you feel like they know it all and we are fools.

The best thing is to learn from this and next time you will be better prepared like myself I have had bad experiences.

All the best,

Primrose.

 

[halfpintfl]

Hi Lesley, I just wanted to say that, I always look sadly at my GP
and ask "I wanted to know if you would be willing to share notes
and work along with my Rheumy, so that you will both know how my care is being handeled?"..Needless to say, I Always get a Yes. But,
in truth, it is a good idea, especially since my hospital is about 5 miles away, including my GP, and my Rheumy is 50 miles away.

 

[greenhaggis]

Halfpintfl -I live only 0.5 miles from both GP and Hospital where I see the Immunologist. The only information they share is the bloods. Whether I get them drawn at the hospital or GP's they still get test at the same hospital lab.

I saw my GP today(10minute appt. lasted 25 mins, nearly as long as my Immunologist appt. that lasted 30 mins.) and she just can't understand why they are not making the time to investigating things further - the buerocrascy (not spelt correctly) is driving her mad! She agrees that all my other problems should not be ignored or put down to SLE when other things have not even been considered or ruled out.

Hair/skin/nerve tingling skin//rashes/acne/dead arm problem/bent fingers - she will be trying to get a re-referral to a Dermatologist that I saw for a biopsy of a birthmark 8-9 years ago. Was told to get in new biopsy in 10 years as the cells were ones that were more likely to turn maglignant! So hopefully I am covered on the skin issues again!

Back/neck/all body pains and burning/bent fingers/tingling fingers/dead arm/finger jerks - GP is going to try through 'Chronic Pain Dept' at the hospital to see if they will give me a full body assessment. I can get a re-referral to the Orthapeadic Surgeon, but she feels that the assessment would be usefull before that. Unfortunately the wait is a few months!

So it seems if I get all these appointments I will be getting more help/advice. All this hassle is down to the fact that my old Rheumi will not take over from the Immunologist (who is lovely, but so it seems just an expert in bloods and bloods connected to Lupus).

Its amazing that evertime I visit my GP I keep getting aksed via forms and check-in computer if I need help with quiting smoking. It seems from reading these forms that the help on offer is amazing - I feel sometimes that a bulk on NHS money has gone to this issue and none is left in the bag for those that have led healthy lives then got ill. I don't have anything against smokers - I just get frustrated when I can't get the NHS healthcare I deserve yet other can (for self-inflicted addictions)!!!

Oh well, l do keep positive most of the time and have belief that with my GP's assistance I will eventually get all the NHS care that I need. I do hope that others that need more help keep pushing and fighting for all that they can no matter how hard it gets!

Love Lesley

 

[raggedyann1]

Lesley,

I am sorry to hear your appointment was so disappointing. I will tell you that hopefully this increase in Plaquenil will really help some of your symptoms that are lupus related. His statement about the Plaquenil dose seems to only happen sometimes over there in the UK and in the USA some doctors do start at 200mg, I know I had 2 of them. Hopefully with the boost to 600mg short term you will start to notice a difference by the time you settle down to 400mg.

I am glad your GP is on your side. Its too bad he can't convince your old rheumy to take you back.

Hang in there,
Karen

 

[halfpintfl]

Hi Lesley, I just want to give you a ((((hug)))) so badly.
What you are going thru is just not fair. Try to make a list of each symptom that you have, then make copies, one for you to keep at home and up-date, and one to hand each dr.
Then when the dr. gets up and heads for the door, just stick your hand out with the list and say"here, this is for you to put into my file." This may work, it did for me. After all, as soon as they leave the room, it's off to another patient, they can't remember everything. So this is my way to help them remember on the day of my next appt. Try it:wink2: ​

 

[greenhaggis]

Thanks everyone for your messages!

Halfpintfl - Brian Fog or what 'I did take a list!' I just forgot to use it! I feel really overwhelmed when I have to talk to medical peolple about my health. I really think I'm still in denial of being unwell! I'm just glad my GP is helping with further with re-referrals. MY GP is really lovely and always reminds me of 'Fern Britton on This Morning'.

Although I do not have to travel far to the Hospital I'm always clock watching to ensure I get back for school runs etc.. Although I do have my Mum living locally she is on full disability and has MS and many more problems! This means childcare whilst I'm at appointments has to be dealt with by hubby, but then it would be useful to have hubby at the appointments! I do not wish my kids to come to the hospital with me as its so full of bugs!!

Last week my youngest planted a cress seed in his nostril so we had to attend A&E (only there 30 mins which was great), since then he has suffered a bad coughing virus affecting his asthma, sore throats and ear aches! He has a Cardiac Appoint on Monday as he was booked in for an Echo six weeks ago, so I just hope they will not turn him away due to his virus. The Consultant from Guys & St Thomas's visits our local Childrens Hospital every month and appointments are hard to get!

At present I have 3 out of my 4 kids suffering with a virus (ooh! plus my hubby) on top of my daily aches and pains!

Life always with kids is very hectic but I'm off with hubby to see Mamma Mia next Saturday in London (kids having a family sleepover at my sisters), so I have something just for me to look forward to.

Hope everyone is feeling a little better in someway today!

Love Lesley