I was diagnosed with Takeyasu Arteritis in Nov 2017. Originally on a reducing dose of Prednislone but relapsed at 5 mgs and Methotrexate was introduced.
The booklet I received on taking the Methotrexate said that you should restrict alcohol in-take to within the recommended weekly in-take unless you were taking it for psoriasis (can’t spell it!). Posts I’ve read on this forum say acolohol and Methotrexate are a no-no so a bit confused
I know that Methotrexate, like alcohol, can affect your liver but monthly blood tests so far say liver function normal.
Reading other posts I consider myself fairly lucky with this condition but there are many things I can no longer do because of sore arms and tiredness and to no longer be able to have a drink well I don’t want to sound dramatic!!!
Just as a side - why is it that Methotrexate is preferably to Prednislone? I was quite happy on 10mgs Prednislone but Methotrexate was introduced to enable me to reduce the steroid in spite of the fact it can have awful side effects.
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PaddyPop
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Thanks for your reply. I count myself lucky to not be as bad as many of the posters on this forum.
Problem is I do like to have a drink and there seems to be different opinions on whether you can or can’t.
Having been fairly fit and healthy and then to be hit with this and not have a drink just makes me want to cry - may sound silly but that’s the case!
I am sorry to hear if the problems you have had with Prednislone and hope you are keeping as well as possible - puts my moaning about a glass of wine into insignificance.
Hi, although I don't drink myself, Having the occasional drink on Methotrexate (as long as it's within the recommended amounts) is OK. Unless your blood test results show a problem with your liver. Prednisolone damages your bones. I now have Osteoporosis because of it, with 4 fractured vertebra.
The effect of Prednisolone is horrendous - how are you now? Do you have to still take it? You believe that a medicine is going to make you better! I am so sorry you have had to go through that.
That’s fine. I think the generally alcohol should be avoided and if my blood tests come back abnormal then I’ll have to reconsider the position. The booklet I have says stay within guidelines and have blood tests - which you have to with Methotrexate anyway. I just wanted to hear what other people’s experiences were.
Hi Paddy just read your posts. I've recently joined this site and find it very comforting to find others that suffer from Takaysu Arteritis. I was diagnosed in July 2017. It was a real shock as I have always been so healthy and never had to take regular medication before. My symptoms were numbness in the right hand with tingling sensation and cold to the touch. At one point two of my fingers completely lost colour. TA was picked up at a routine GP check up when she could not get a Bld Pressure reading from my right arm. I was referred had a dex scan which showed up narrowing of arteries in my right arm, then a CT scan followed by a Pet Scan. TA was then diagnosed. For me it's the Aortic Branch which us affected and luckily it has t affected the vessels of my heart.
I do get a slight ache in my arm now and again it for me it is more the numbness in my hand.
I've come to terms with the illness now (have no choice!) I started on 40mg Prednisone 20mg Omaprazol, Adcal twice day. I'm down to 7mg now Prednisone but also take 20mg Methotrexate since January. I take 5mg Folic Acid daily except for the day I take Methotrexate and it seems to help with the nauseous side effects a d general feeling of being on another planet!
My leaflet states government guide lines for alcohol. I was very wary when I first started methotrexate, but now indulge in a few drinkies. Touch wood my blood tests have been ok so far! I have blds checked monthly. Hope your keeping well.
I still haven’t really come to terms with TA mainly because of the things that I can no longer do and I hate taking the medicine.
I’m interested in the amount of folic acid you are taking. I was on 20mgs per week but this is now reduced to 15 mgs because one of the white cell counts was low but I am only taking folic acid 5 mg once per week. A friend who takes Methotrexate for a skin condition also takes her folic acid daily. It was a cough caused by an iron deficiency that led to my diagnosis - I may ask for an iron test with my next bloods and query whether the dose should be raised.
Have you had your bone density checked? I am trying to reduce the Prednislone as far as possible after the replies I received to another post where I asked why Methotrexate is preferred to Prednislone.
It’s good to hear from others with this condition, not only because of the useful info you gain but also it saves the family from being bored to tears hearing about this illness!
Hi Paddy good to hear from you. I know what your saying about coming to terms with TA. It's difficult! Especially if you haven't had to take meds before and been heslthy. Apparently TA is very rare which is another reason why it's good to hear from others who suffer from it. It's such a shock isn't it to be told you have TA and that it's very rare! I love socialising and so initially it knocked me for six the thought of my life having to change to accommodate side effects of the drugs I have to now take, and worse than that to be told it could be for life!!! My Rheumatology Consultant left unfortunately, I say that because he was so nice and very understanding. So on my recent appt in November with new Rheumatology Consultant I was told that it depends on how I progress with the meds and may not be on Methotrexate for life! The plan for me is to decrease my steroids by 1mg every six weeks then just stay on Methotrexate. If it flares back up I will have to go back on steroids. I used to take 10mg once a week of Folic Acid but the side effects with Methotrexate making me feel so spaced out at times and nausea, it was suggested to try taking 5mg every day except days i take the methotrexate. It seems to have helped. I am naughty at times and I skip the Methotrexate if I've got something important happening which involves indulging in alcohol! So I will be skipping my dose next Tuesday for Santas visit!!! Not ideal I know, but it's only now and again and not regular occurrence.
I haven't been offered a bone scan. I wont take the meds to prevent osteoporosis, it's an awful drug and dangerous as could cause so many other problems and stays in your system for 10 years after you stop taking it. So I refused it. They shouldn't just dish out the meds without a bone scan first to see if you need to take it. That's my view anyway. I'm pumping way to many chemicals in my body already! I have to take statins and aspirin as well. Yes I know, Prednisone is not a kind drug either, can't wait to get off it. I've out on 2 stone in weight since taking it! I'm going on a low carb diet after Christmas and step up my exercise to try and get the weight down. Having to cope with that as well as everything else can get you down some days. I try to keep positive most days, but there are some days where you can't fight it! What is it that you can't do now? How has it changed your life?
Nice to be able to chat about it. It does help. Knowing some one out there understands the symptoms and everything that goes with it.
I enjoy a glass of wine before dinner, and occasionally go out and enjoy a cocktail with friends. My doctor told me that it's safe to have one drink a day while on Methotrexate - basically, he said that one of the intents of medicine labels is to protect pharmaceutical manufacturers from lawsuits, so they are extra cautious. My liver tests have all come back great, so right now I have a relaxed attitude towards continuing to enjoy my lifestyle. Of course, if any future tests come back with a different result, I'll talk to my doctor and reevaluate. Good luck to everyone - I too was in perfect health before getting the shocking RA diagnosis.
Agreed. Let's keep enjoying our wine unless and until there are signs of trouble later. It's hard enough dealing with this condition without taking the fun out of life!
I am a retired GP diagnosed with Wegeners (GPA) in2008. I have had neuro symptoms for four years and have abnormal brain MRI since July 2017. Was on methotrexate from 2012-2015 but had to stop due to SEVERE side effects. However I was able to enjoy alcohol whilst on it without detriment to my liver ie my liver blood tests were always normal.
I am a complex case and am going into London National hospital for neurology next week for a bunch of tests as my diagnosis is in doubt.
Since stopping methotrexate I have solely being relying on prednisolone at doses as high as 55mg daily as other drugs including rituximab infusions were either ineffective or had intolerable side effects.
Your point re pred v methotrexate is a good one and I have read some replies which quite correctly suggest that long term pred can have serious side effects. However as both a patient and doctor I have my doubts about any toxic agent going into the human body and in my case the steroids have saved my life and I was lucky enough to have the knowledge re the potential devastating effects agents like methotrexate can have on patients. Personally I would choose pred 10mg daily rather than methotrexate as pred 10mg daily is a RELATIVELY low dose but everyone is different and if you appear to be doing well on methotrexate then I would stick with your current management plan.
Enjoy some alcohol within the National guidelines ie no more than 21 units per week for a male.
A stiff G&T is my preference and in my opinion better than popping pain killers!
Cheers 🥂
H
PS What part of the world do you live in? I ask because treatment ideas vary from county to county, country to country and doctor to doctor!!!
I went to my GP with a cough that got steadily worse and was eventually referred to an Ear Nose and Throat Cinsultant who referred me to a Respiratory Consultant.
The Respiratory Consultant carried out a full range of bloods (no one else had) and showed the results to a colleague who happened to be an expert in Takayasu Arteritis! A PET scan confirmed the diagnosis so I was very lucky. I see Dr Allard at The Cromwell. My medical insurance is for now is covering the cost but as a chronic condition, I know they will pull the plug at some point. Luckily again, Dr Allard’s ex- registrar is a Consultant at the Hammersmith and runs an NHS TA clinic there.
I’m looking forward to a glass of Malbec tonight!
Thank you for your very informative reply. Best of luck with the tests.
Have taken MTX for 20 years for control of GPA, luckily with no side effects, and have always had a couple of drinks with no detriment to Liver function.
Hi Paddy, I have aortitis.... I am not under 40 lol, so they dont call it Takayasu arteritis in my case, although I have exactly the same disease process and luckily was diagnosed witbin 6 months of presenting my symptoms. It has a high relapse rate, I'm told, so be careful and be vigilant. My illness responded dramatically with prednisolone 30mg initially but my inflammatory markers have never gone back to normal, in particular, my crp sticks at 12-15 and thats over the last 3 years. To cut a long story short, my consultant was also keen to get me off steroids as long term, they can do horrendous damage and are very difficult to get off, the longer you are on them. Im still on 1mg, but it has taken me several attempts to get this far without feeling quite ill. My consultant added in an immunosuppressant after 6 months, with a view to coming off steroids and staying on the immunosuppressant for some years. Saying that, my crp results have remained the same and I have now been on them over two and a half years. I understood methotrexate to be a chemotherapy type drug, used, when a more aggressive approach is needed to dampen down your immune system as prednisolone on its own, wouldnt help to stabilise your condition. My consultant was going to change my treatment to cytoxan, a while ago to dampen further my immune system, but then after liasing with the vasculitis team at the Freeman Hospital, it was recommended that I start azathioprine, as opposed to mmf, which is what im on now. He did mention that for very complex reasons, certain immunosuppressant meds act on different parts of the immune system, so sometimes its necessary to readjust or change medications. Take it easy and look after yourself. The fatigue etc is part and parcel of the condition and the medication. It takes some getting used to.
Sorry for the long winded reply... I hope that some of it is of use to you.
Not long winded at all! What’s really interesting and perhaps really worrying is that everyone’s experience is quite different!
I received the news on the TA as a 60th birthday present so I am also not under 40! One of the first questions I was asked was did I have any Japanese heritage!!!!! My family are all Irish!
I was also diagnosed within about 6 mths and was able to reduce to 7 mgs before a relapse and Methotrexate was introduced. It’s funny (not) that when given the methotrexate, the possible side effects were highlighted - the pharmacist, my GP and basically anyone who deal with jumps when they hear Methotrexate is involved - but I have not found the same with the Prednisone despite the fact it seems to be the drug you do not want to be on!
I’ll just have to get use to the fatigue and the achey arms!
Thank you for replying. I have found that sharing on this forum not only provides a lot of information but also gives me contact with others who are going through the same experiences. I am also not boring my daughter with talking about it all the time!
Take care and please keep me informed of how you are.
Thank you Paddy, I will. I think Takayasu was the Japanese guy who discovered this type of vasculitis and it is quite prevalent in Japan, but not so prevalent in the UK, so bad luck to both of us! And anyone else who has this. You're right that vasculitis affects everyone differently, despite having the same baseline symptoms, generally. I was diagnosed quickly, within 6 weeks, not 6 months, as I had written, but only because my gp thought I had a pulmonary embolism, so I was rushed to hospital. It took another 5-day admission to hospital and eventually a PET scan to show up my beautifully inflammed aorta lol. That was 3 years ago now and I just accept my illness, go for the blood tests, see my consultant and specialist nurses as required. It becomes a way of life really, although I try not to immerse myself in my illness. I wish you well too 🐱
Just as a matter of interest, Paddy, are you seeing a rheumatologist? And has he/she given you an explanation of why your arms are aching? I ask this because the type of vasculitis we have, is often called the 'pulse less' disease and this is because arteries which branch off from the aorta can also be affected. The brachial artery to the arms, if affected, can make the pulses in the arms absent, or difficult to hear and this might be why you feel the aching... It might also NOT be the reason. I don't want to scare you, but I'm just hoping that your rheumatologist has a comprehensive knowledge of vasculitis. 🐱
I am seeing a rheumatologist snd I’m confident he has a comprehensive knowledge of TA. When I’ve mentioned the aching arms (right worse than left) it’s accepted as one effect of this condition. Apparently he had another patient who could not lift a news paper because of the pain in her arms. I have just assumed that it’s because of the damage caused by the inflammation of the arteries. To be honest though I haven’t actually asked if if that’s the case.
I think you are very lucky to be dismissed so quickly when you read many of the posts where diagnosis has taken much longer.
The pulse in my right arm is virtually non existent and my GP had problems taking my blood pressure on that arm!
The PET lit up my aorta and major arteries to my arms.
I’m interested in what else you think might be causing the pain?
Hi Paddy, I'm pleased you have a good rheumatologist and yes, it is an effect of aortitis. I was lucky, in that my vasculitis hadn't spread to my brachial arteries, as a result of being diagnosed quickly. I'm not a doctor, but only asked you about your arm pain in relation to your aortitis as it flagged up in my head. It probably isn't anything else, to be honest, as firstly, you have asked your consultant about it and secondly, you mentioned the absence of a pulse, so it seems too coincidental to be anything else, although I would have expected your consultant to explain further. Your pain will probably be because of impaired blood flow to your arteries. What I don't know, is if your pain in your arms will improve in time, with treatment. And, your consultant won't know the real extent of the damage, without an mri scan. A good question for your consultant. In the case of my aorta, I was told that the inflammation had largely resolved, but the walls of my aorta are now 'thickened' and that is permanent. To be honest, as long as theres blood getting through, I'm ok with that!!
I think the achey arms are here to stay unfortunately. The PET scan flashed like a Christmas tree. Enlarged aorta and flashing arteritis across my chest and down my arms.
The delay in diagnosis was my GP wanted chest X-rays for the cough before referring me to an ENT consultant who sent me to a Respiratory consultant who worked next door a Rheumatologist. Had I seen the Respiratory consultant in the first place, the diagnosis would have been in weeks!
The methotrexate debate on alcohol may now be academic with my last bloods - white cells on the decrease and what looks like everything else being flagged. Hopefully someone has made an enormous error. Repeating the tests tomorrow. I think I need a drink!
Blood tests reminded me of school with all the ‘see me references’! Sent a copy to my consultant who was not concerned - not that I understand any of this but he said that the white cell count was fine except for one so Methitrexate reduced to 15 mgs. I queried liver function and it was normal. So panic over until the next time!
You might have to undergo some adjustments initially, until you show signs of being stable for some months and this can take time. One thing I have learnt to be, is patient... Its almost forced upon you to be patient as the body takes a lot of time to adjust and readjust to any medication changes. If you are having your bloods checked regularly, the medics can pick up on any abnormalities and act accordingly.
Ive been very run down and fatigued for some time now even though most of my blood results are fine, apart from my crp, which remains raised. Im probably going to start a new immunosuppressant drug in January. I told my consultant I wanted time, to research the drug and know what the side effects are etc, before I decided to go ahead. To be honest, they all have rotten side effects, but not everybody reacts the same... A necessary evil though, nontheless. So on it goes lol.. Onward and upward, I hope 🐱
Bloods seem to have stabilised with me and no one else seems to be worried.
You are absolutely right - all the drugs can have horrible side effects but you may not suffer with them. Let me know how you get on with the new meds?
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