Does anyone know of a consultant that is experienced with RA or other types of rheumatism that I can see privately as I am not convinced.
Prefer them to be in the Exeter or Barnstaple area.
I have never had so many pills prescribed in my life. Within 4 weeks I have gone from nothing to a pump and as of today 11 different pills and some are three times a day apart from the methotrexate. For me this is unacceptable and it is now affecting my sight and mind. Just cannot remember what to take and when and the nasty taste that they leave behind.
I am so confused by the way this is ruining my quality of life and now double vision from the meds.
Within six weeks I have gone from a chronic shoulder pain to pain and stiffness all over and now have lost 85% of my strength. I cannot even hold a rechargeable drill-and need two hands to lift a plate.
Gosh when I had a dog I would take it to the vets, one simple injection cured all.
Do you have all the information the doctors used to make your diagnosis? As if it was clear cut then you could be throwing away money on a private appointment. So raised inflammation markers, positive antibodies, hot and swollen joints, morning stiffness are classic symptoms - many people have 3 of these. If less than 3 then perhaps there are questions to be asked.
None of us wanted this disease, and for many it progressed shockingly quickly (I went from fit/normal to bedbound in 6 weeks), and none of us want to take a bucket load of pills every day. My medicine cupboard just had an out of date pack of aspirin, and now it's crammed full. However sometimes denying the diagnosis isn't helpful as it stops you moving forward. It took over a year, but I did get back to 95% normal.
So reflect whether you do really need a second opinion - and you are entitled to ask your GP for one anyway.
But if you are getting double vision then tell your doctors about that now.
It is confirm that I have the positive antibodies. While I have inflamed joints I do not have the swelling just chronic joint pain. I owe it to my daughter to get the best that money can buy as we lost her mum a few years ago and she is still very young. I have to try or just give up. Presently I am not physically strong enough to hold her and where I live you need a car or outside help
I'm really not trying to tell you what you should do, I'm merely questioning whether spending money on a private rheumatologist will lead you anywhere. It could just increase your frustration if you end up with a similar opinion as you have already. But whatever you do you should not give up!
If you are sero-positive, have raised inflammation markers and painful joints what do you think it could be if not an inflammatory arthritis? Or is it that you don't think the treatment you have been offered is right, or the best one for you? Do be aware that biologic drugs are not generally available privately, but must be prescribed within NHS structure.
So perhaps money would be better spent on getting some help in while you get stabilised?
High sugar levels can cause double vîsion which could be a consideration if you are on oral steroids.
As Helix says, double vision needs to be seen by a medical practioner straight away so make a GP's appointment for Monday. This is the most pressing thing to get attention for.
In the months following my diagnosis I was taking 36 pills a day at one point.
I am now down to 6 and an injection once a week.
I thank my stars for the NHS and the access to Biologic therapy which costs a fortune per injection.
Because of this therapy I can work in a demanding physical job and pay income tax which goes someway to mitigate the cost to The Health service.
I'm not saying seeing a Rheumatologist privately is essentially a bad thing and your GP will refer you but very likely it will be the same specialist you would see on the NHS.
If you are willing to pay for a consultation which would be several hundred pounds and extra for imaging that's fine in that the specialist would have more time to explain things to you but regards lifetime treatment privately I'm not sure that's within anyone's budget.
You are in a place that most of us here have been in and it is a time of great pain , anxiety and fear of the unknown.
I wish you the best but your very first step is to see a GP about the double vision.
Added to the other key symptoms for a diagnosis already mentioned, two key symptoms are disability (especially in the hands but also upper body) and sudden onset. Have you had any imaging done, eg ultrasound or MRI? These will usually show early RA, and an x-ray will show marked deformity of the joints. With the hands, you tend to drop things, have no grip, no power in arms, cannot write or handle money or turn taps or door keys, can't fill a kettle or pour a cup of tea. The shoulder can be affected but I found stiffness throughout the body if I did not move. Try to keep moving as much as possible to alleviate stiffness and reduce pain.
I'd think twice about a private rheumatologist. I saw one while waiting for an NHS appt, and I was led up the garden path. You might get a better idea from a physiotherapist and it will cost a lot less. Whilst it may not always be the case, private specialists tend to have interests in other areas, eg private clinic and gyms which they partly own and though you might get the correct diagnosis eventually, it will cost a lot en route. I was referred to one and if I had gone ahead instead of going to my own physio, the course of physio would have cost me £5,000 - plus I was given a diagnosis of gout without any tests for gout being done. The NHS said it was RA after imaging. They also said the sudden onset was suspicious and also that gout goes away in a few weeks, but not RA.
You could drop some of the drugs as it sounds as if you are taking far too many and sometimes they conflict. I did not get on with prednisolone - came out in a rash and it did nothing to alleviate my symptoms.
My physio lady is great, mri showed inflammation of ankles last year, just blamed it on UK weather lol. Hands are weak, have now an old antique sugar bowl with two handles as cannot hold tea and sugar caddy, cannot pull out a plug from a socket or lift the kettle, just all of my strength has gone. I am so stiff and sore, a young person in a 200 year old body.
It certainly sounds like classic RA to me, which is where the hands are suddenly affected. Sometimes the diagnosis is difficult when it comes on slowly and the large joints like the hips are affected, but it does move around, and blood tests are normal.
Recap what investigations you have had. Have you had ultrasound, MRI, nerve conduction tests? If you have, and they have come up with that diagnosis, it is hard to see how it is wrong. However, I would not take all those meds at the same time - you need to cut them back. If you have not had the tests, then it can work out quite expensive privately. Some people on here choose a private rheumatologist who has an NHS appt so they can get at least some of the tests done on the NHS.
Hi Minty.....When you are first diagnosed with a Rheumatic Disease it is very scary as not only are you in pain, but you really don't believe all the information thrown at you.
I presume you saw your GP & were referred to Consultant Rheumatologists? If that is so the Consultant will probably have a Private Practice where you could pay to see him/her. ..but basically you would get the same advice....just faster.
If you are being treated solely by your GP ask for an urgent referral to a Rheumatologist.......in most parts of the country there are long waiting lists, so by asking for a Private referral you may be seen more quickly.
However as you seem to be having unacceptable neurological symptoms I would go back to your GP IMMEDIATELY......if you are as confused as you say you may be not taking your medication as prescribed......& this could be causing all the symptoms.
For example Methotrexate should only be taken once a week.
Explain to your GP's receptionist the symptoms you are experiencing & ask for an emergency appointment straight away.
If you can't get an immediate appointment call 111. That service will get you an apointmrnt with a local GP within hours. They got me an appointment within a couple of hours on a Sunday morning.
Thank you for the informational. I did see my gp last week and he said there was too much going on just now and give it a couple of weeks.
I have spoken to the pharmacist at the hospital who checked my script and said all ok but that the gtn spray can cause problems as also being treated for angina and poor circulation.
I had a private mri as my ankles were very swollen and it showed inflammation for which I received steroid injections last year. Should have checked into that sooner.
I spoke to the nurse yesterday as they are concerned about weight loss and ferritin levels being low and poor circulation, legs are extremely cold and cholesterol is now at 9.5 even though I am on statins. It is now confirmed that I have lost over 7 kg, hence they are going on with cameras to have a look around ASAP
The nurse put her hand on my shoulder yesterday and said she thought it was the RA and stress from being a single parent and the recent diagnoses. Told her that I have no stress as a single parent just from the meds. The nurse at the hospital knows of me as her sister is my neighbour, she tried to be helpful and asking if there was any help that I needed with Zina my daughter. Told her all under control and apart from RA I am happy. The past is the past and i am more than qualified to recognise stress.
But Minty it's not under control,is it? Whatever happened in the past you need help now.
You are running from doctor, to pharmacist, to nurse yet you are still not getting any better.
I don't know how old Zina is, but even a person with no health problems finds it difficult to look after a child on their own.
Right now your health is not getting any better.....you must explain this to
your GP & emphasise you are the sole carer of Zina & that you can't continue like this....you need a thorough investigation to get settled on medication that doesn't cause these symptoms.
Go back to that nurse & ask what help is available ...who will look after Zina if you end up in hospital?
Everybody needs help sometimes...& Minty, It looks like your time is NOW!
Accept help ...you must get fit for your daughter.
Sorry if this is not what you wanted to hear.....but your daughter needs a fit Daddy.
Zina is now seven, I have an ex who adores Her, we parted on great terms and are best of friends, more like brother and big sister as she was mummy’s best friend and telephones me twice a day. Sorry for poor grammatical errors but cannot work out this phone. When my daughter is home luckily the ex gf stays and she is the best mummy for Zina and loves her as her own.
It is the doctor who made so many appointments after a blood test and chronic pain and loss of strength,even he agreed that I had gone downhill very quickly and a huge loss in weight with shoulder and joint pain.
The consultants then all do their bit prescribing pills for this and that
.I managed to get the cardiologist to feel my legs ref the poor circulation which was something else picked up as they are always very cold even in hot weather.
I don’t believe in bullying someone that is trying to help same goes for being able to pay if one can afford to pay.
I am a very organised person, I have always had a back up plan in life because of the nature of my career and being a single parent. The wake up came six years ago when I experienced a huge void in my life. It was then I put everything in place.
guess RA and other recent health problems recently discovered actually make one reevaluate life but I have everything in place just in case.
I guess that it is time to knuckle down and deal with the health situation, just not sure how to say this to the OT people and maybe it is their nature and special female kindness, I do not want sympathy for my past or even want to go there as it is all neatly packed in boxes and well under control. I have two family members that are physiatrists although at the other side of the country we skype often as family
My Devon home is on the market and I already have a solid offer after only five days and moving to Stamford UK as where I live is just too remote, I will be much closer to friends and cousins who are in the medical profession.
IT sounds like you have a plan Minty, but do get that double vision checked out PDQ.....it could be a sign of something serious....& where would your plan be then?
If i unfortunately had an accident I could rest knowing everything was taken care of. For a few years I have kept on top of my life and had everything in place.
Several years ago I put everything in a trust and an only a benificary of my estate along with my daughter.
Please just see your doctor & tell him about your double vision...stopping even just one of your drugs could stop it......& then you could deal with your new regime of drugs to treat your RA.
Once you are not in pain things will be much easier to deal with.
I'm sure you won't regret it.Dealing with RA/RD can be a slow old progress..I'm 20 years down the line & have seen great progfess in RA drugs, I'm sure you will too.
Let us know how you get on.
That's a huge change for you. I so admire.
I’m in the US and I do have an RA specialist as my RA doctor. Like you, I am skeptical about the diagnosis but I have been suffering with the pain for some time. And, I too. do not like taking my meds. Six tabs once a week of methotrexate while being weaned off the prednisone that I don’t want to stop taking because it does help the pain. Folic acid and biotin everyday to help with the hair loss. I’m not a pill taker and hate it but I’m going to give it a good try. I get headaches all the time now which was not usually before the meds along with nausea all the time. I hope and pray it works for me, you, and all of us.
If I've understood you right, in the space of two months or so you have been diagnosed with RA, poor circulation (possibly atherosclerosis or raynauds?) angina and hypercholesterolemia? Wow, no wonder you feel like shit!
And although it's good that the GP was sufficiently concerned to refer you to different people, the GP should be holding the ring and making sense of all this for you. Each specialist will be more focused on their specialism and may not be joining the dots between these different symptoms, hence you get one pill piled on another as you identify.
And especially if you are about to move to another area, you need to push to get clarity. A GP telling you "there is too much going on right now and to give it a couple of weeks" is not an appropriate response!
Maybe you can see where I am coming from, to be hit so hard with so much after a couple of blood tests, have to say while I was on steroids I was painting my chimney stack. Prednisone but as liver was down to 81% I was taken off them.
After a steroid injection and prednisone it was the first decent nights sleep 💤 I had in weeks. Hence I believed I had a virus
My GP could not understand how I had gone so long in pain but the day I walked into his surgery I demanded he did something or get my arm removed because of the pain. He nearly had a heart attack. Shame he is a god guy and has the best intentions but does not want me popping my clogs on his watch. Guess that he is a little worried about all the meds I am taking.
Maybe half an hour in the hydro pool and a couple of ibuprofen would give me better results. He did at one stage suggest cannabis as a solution.
I forgot to say in my last reply that you should be careful taking ibuprofen regularly. You should also take a prescribed stomach protector pill as otherwise ibuprofen can cause a very nasty reaction. I know from experience and now am banned from taking it and any similar type.
Regards
lymphgirl15
I hear you but I can be a bully, I have already got hold of a family member that is a consultant at Leeds Royal and they contacted him via his GMC number asking him to do a thyroid check as well.
If you could have seen me in Nov 2017 one of the fittest people at the gym and doing marathons and to see me now it would shock you.
Ah well
I am not going to sit here all day, going for a hobble into the field behind my 🏠 and watch the sheep. I think the nearest pool is 9 miles away or I would be there
I can heartily recommend a referral to Dr Stuart Kyle at North Devon District Hospital Barnstaple. He has looked after me for some years. I have another chronic condition and he is concerned for and interested in my overall health and how the two conditions react together.
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Information evening in Harrow 25th March
Need information
Information on hydroxychloroquine
Can anyone help with drug information please?
