I am new to this forum but hope to participate/ benefit from your postings.
My RA was triggered by a drug (Posaconazole) prescribed for aspergillosis. I have seen a Rheumatolgist, who has run tests and confirmed I have RA. This was shocking news to me and life changing. I have always been independent and found it difficult to ask others for help. I was able to manage one condition but the two have knocked me off balance completely. At first I thought the RA was a reaction to the drug, which would go away. I had no knowledge of RA and didn't know what was happening to my joints. My first appointment with the Rheumatologist was in a wheelchair as my joints had completely seized up. I am not sure how much damage has been done to my joints and I view my body with much suspicion wondering what is going on and how it will progress. I have had methylprednisolone injections, which helped, but the Sulfasalazine I was unable to tolerate and am now trying out Hydoxychloroquine, which is reasonably tolerated. Through all of this my husband has been so amazing and understanding although I feel so guilty that our lovely life has been turned upside down by my RA.
Anyway, we have a holiday booked in the sun at the end of May and I am trying to think positively and be able to go. I would appreciate any helpful tips you may be able to provide on medical insurance, for example, and just coping generally in order to have the best time. As I am 68, I am not sure if I will be able to go on any holidays abroad again with my future looking so uncertain. Some reassuring words would be so appreciated as I am very frightened if I am being completely honest.
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Dmarding
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Hi Dmarding. I can't answer your question about your holiday in the sun but I just wanted to say I am newly diagnosed too (March) and also have lung disease with COPD and bronchiectasis. My consulatnt has been excellent and I am now coming to the end of 6 weeks on steroids and building up sulfasalazine medication to go with the hydroxychloroquine I have been taking.
I go from acceptance of having RA one day to feeling frightened another - more from reading the side effects of drugs than the disease.
This forum is excellent with so many people willing to share their knowledge and to help. I hope that you get some answers soon.
Did you know that the NRAS site has a helpline which is open Mon- Fri ?
Thank you so much for your reassurance and reply. I have found the NRAS website and their publications very helpful and may well telephone their helpline.
RA is certainly very frightening in itself, let alone the drugs used to keep it in check.
I think your a bit shell shocked and that is understandable but really your way off mark. Life with RA is normal for me with holidays in the sun which arelovely and your life will continue as it always has done. I have other issues as do a lot of people but for most although sadly not all the medications work and work well. As for insurance no one cared I just declared it and no issues. Since having RA I’ve had numerous holidays you just need to be aware some medications do make the skin more sun sensitive so a good level of protection is needed. I’ve said this before RA is a journey there may be some blips but travel with hope as it is not helpful to be distraught when in time you’ll be living a normal life just have to remember to take the meds and forget a diagnosis that is far from life threatening. It is simply a minor inconvenience and there are a lot of good medications which enable us to enjoy our lives, holidays included. Enjoy the sun I’ve been to India, Cypress, Tunisia, Morocco, USA, Sweden, Norway,Russia, and even Mexico without problems, plus a few cruises. I hope to get to go on Safari later this year.
PS Never panic over medications as there are thousands of people who take them and lead normal busy lives, sometimes side effects occur but it’s about benefit v risk and left untreated RA will cause damage and not just to joints, it’s affected my blood so look at the medications as being a tool that enables not a risk that damages.
Thank you, Medway-lady, that’s reassuring. Obviously, I am concerned about the drugs to moderate the RA as a particularly potent drug triggered my RA. Also, the problem with potential lung infections and the concomitant ongoing IVs I have to take for aspergillosis. I am hoping that JAKs will be the eventual way forward although I know these have some drawbacks in terms of lung infections.
You speak from a position of wisdom and experience and have given me some hope for my holiday and maybe more to come, for which my thanks.
Don’t bank on JAKs as a few people won’t be able to take them because of clotting factors. The risk is small but there and I really do understand I have kidney failure due to a common medication prescribed in good faith but it’s about risk and to be frank I’d still have taken it as this has only happened to a few dozen people worldwide and was entirely unpredictable. My life changed overnight but it can’t influence the thousands of people who take a medication that benefits them. Biologics have risks and so does paracetamol which kills people every year but most of us take it without too much worry . Be optimistic and think that long before JAK’s there are many medications. I’ve had RA for a long time and so far 3 DMARDS and 2 biologics all the meds have worked just had to be changed because of CKD and UTI’s but I’ve been settled for years on AZA now with Abatercept. Side effects do often resolve in time so be patient and enjoy life.
Thank you Medway-lady. You are a beacon of light to us all with your positivity and wisdom. I have mulled over Abatacept as a possibility but will have to see what the Rheumatologist has to say. Another possibility is stem cell therapy… I am sure research will eventually produce something we will all be able to tolerate and with no side effects. Ever the hopeful.
when I was first diagnosed 12-13 years ago I went from able bodied to completely incapacitated in weeks. It was as if I had been run over by a train. I really thought that was it! I couldn’t cut up my foods, walk to the shops, etc etc a long list of normal things that were suddenly impossible. My hands and knees looked like footballs and I had pain everywhere. I really could ‘t believe they weren’t permanently damaged.
Now, thanks to the drugs I’m just fine. (I have just had a very bad year as the drugs failed, but fingers crossed I’m back on the right path again).
You are very early on, so really don’t depair as the one thing about RA is that yiu need patience! Everything takes a long time.
Your holiday in May may take a bit of effort to put support in place, such as airport assistance. But hopefully future ones will be fine. I’m just 2 years younger than you and travel lots.
Thank you so much for sharing your experience with me, helixhelix. I completely identify with everything in your first paragraph.
The fatigue factor has been beyond anything I have ever experienced before. Just getting up from a seating position required every ounce of energy in my body leaving me totally exhausted.
Patience is something I am learning to develop and asking for help when I need it, which hasn’t been easy.
The heads up on transport assistance is very helpful and I will do this if I need to. This holiday has kept me focused and motivated and I really need it.
I am so pleased that I joined this forum as it is so lovely to share with others who have RA, not many people are familiar with it and I don’t want friends and family to think I am feeling sorry for myself. A stiff upper lip is required in abundance …
Sending gentle hugs. I hope you do manage to be able to go on holiday. Be honest with your travel insurance company to protect yourself. I too have RA it's manageable although now and again it tries to dominate me. How dare it? I've had a bit of a shock as I have now been diagnosed with severe Pancreatitis and Diverticulor disease. Coming to terms is hard and I wish you well and don't forget the high sun factor. 😀
Being newly diagnosed with RA is always a big shock, but once you get prescribed the right drugs for you …..things will fall in to place…but it can take more time than you probably envisage.Realistically you are looking at a year or more until things come together.
One bit of advice- don’t set your mind on a certain type of drug…your rheumatologist will advise from long experience what he/she considers the most suitable treatment for you…..what suited Mrs XYZ…..will not necessarily be right for you.
Many here have been diagnosed 20+ years…me included & we lead as good a life as our peers. Pre Covid I travelled many times a year…the one essential is to make sure you have really, really good travel medical insurance.
Thank you so much for your reply AgedCrone (I applaud your sense of humour).
I will definitely ensure I arrange appropriate medical insurance for my holiday as this is crucial and I don’t want my husband to be left in an invidious position should my health deteriorate.
It looks like a long haul to get the drugs right. It is drugs that triggered my RA in the first place so I am understandably cautious and frightened about the months ahead. This is something you have all been through and a necessary part of the treatment pathway. I am reassured by your assertion about having as good a life as your peers and I am looking forward to this time…
Thank you so much for replying and the gentle hugs, Jackie1947, so appreciated.
I will be arranging medical insurance this week and will be totally upfront about my health issues.
I am concerned about what drugs will be used to supplement the Hydroxychloroquine and the length of time, through trial and error, to arrive at a manageable regimen for my RA. That it is a lifelong condition, and there is no cure, is certainly a daunting prospect and mentally as well as physically challenging. It is so wonderful to have a supportive group of fellow sufferers to reach out to and to gain some reassurance about what to expect and how to manage this disease.
I am sad to hear about your recent diagnoses. I can’t imagine what you must be going through. I am sending you back gentle hugs. Be strong and have a good supply of tissues for quiet moments on your own. xx
I think you have excellent advice on here from many people. I have had RA since 1987. That started when I lost my mother suddenly. It just happened overnight the symptoms. I also think having Hepatitis vaccinations when working for the NHS spurred it on.
I have had numerous holidays . Listen to your body and try not to let stress happen in your life.
Thank you for sharing Juliea793. I know only too well how devastating it is to lose a loved one.
I try to avoid stress in my life although it isn’t always possible. However, holidays are meant to be relaxing and stress free so I will keep these in clear focus.
Hi Dmarding, welcome to the group. Like Helixhelix, my RA came on like a steam train which knocked me out within a few weeks. I had a cruise booked from ages back and was not going to miss it so managed the train, flight and taxis required to get there. This was before I knew it was RA. I'd had the blood tests the day before leaving and a GP appointment was booked for when I got back. Halfway getting there I thought I'd made a mistake to go but once there, I was so glad I did it because the holiday was a break I needed. However, when I got the diagnosis and saw a consultant, he prescribed DMARDs but also gave a short course of prednisolone to get me moving again. If your GP is willing to do this for your holiday it will make the world of difference. When I was on pred, I was almost back to normal. It's not a long term solution but it does give a break from the worst of it.
Thanks for the warm welcome, Gottarelax. I hope that you are staying true to your name as this is definitely something we should all do.
I am also going on a cruise (for a week) and have never needed a holiday more. When I had my first consultation with the Rheumatologist he put me on a course of prednisolone while awaiting test results and, yes, they were amazing . I have had 2 methylprednisolone injections since February, while trialling DMARDS. I have an appointment with him a week before I go on holiday so will ask his advice. I know that corticosteroids are not a long term solution though… it’s all such a fine balance.
I have a multitude of issues that either keep me very close to home or packing a load of luggage than can only be carried by auto-would not be able to fit on a plane and may not pass the inspection process to bring on board. With your issue as you explained it, calling ahead to get wheelchair service to the plane would be a good start. Packing absolute essentials in your carry on-medications you couldn't do without if your baggage were lost-goes without saying. Some medical items like CPAP machines are allowed as additional carryons. If you inform your front desk clerk at the hotels that you need handicapped accommodations in advance it may save you from stair climbing. You might check if there is an elevator available too. If you need a wheelchair at your destination check on that before leaving home. Bring your prescriptions with you in paper form if possible . If you lose your meds you may be able to replace them. Just a few thoughts about this and what I might do if I was in your situation. My issues keep me from doing any advance ticketing as on the day of the vacay I might be too ill to roll out of bed, so I am pretty disappointed about not going on my dream trip. I understand your fear and wish I could add more comforting words.
Thank you, OKShakespeare, for your words of wisdom. Such good advice based on your experience. I think maybe a wheelchair at the airport might be a good idea.
I’m learning that you have to take each day at a time with RA as no two days seem to be the same.
medway-lady has covered most of the views. In the early days you do go through a kind of grief/loss for your previous life/ self. However there's life after RD & it includes holidays.
Only other thing I'll add is be kind to yourself, as fatigue will hit you so rest to be able to do the enjoyable thing s between.
I was going to say similar...don't expect to be able to do what you previously did, pace yourself, choose your activities wisely, and have some down time each day.
Personally I've given up going abroad as I found the travelling exhausting, but many on the forum still travel far and wide. Everyone is different.
We holiday in the UK now, travel by car so that I can stop when I want, do what I want and pace myself to my own needs. We have had some fabulous times. Next week we are off to Glencoe, the weather forecast is fabulous and we have a list of things to do, by preference, we won't get them all done, but will enjoy the things we do.
I've emailed ahead and organised a loan of a wheelchair for a short while so that my partner can get me as far into the mountains as he can (I don't normally use a chair, but can't walk long distances).
It might be best discussing your concerns with your husband before you go, manage expectations.
But you can and will enjoy holidays, they will just be different to pre RA days.
Thank you for your reply, Mmrr. I will be realistic in my expectations and listen to my body. My husband has been fantastic about everything even though it has completely turned our lives upside down and I have had to rely on him for so much.
This may be my last holiday abroad for a while and I want to be able to savour every precious moment of it. I will pace myself and plan ahead as much as is possible.
I love Glencoe, such drama and grandeur! You are in for a treat, especially if you have fine weather. I hope that your time in Scotland. Take care.
You sound as if you are moving ahead positively, it is the only way 😎.We live in Edinburgh, so not such a big journey for us, having passed through Glencoe on so many occasions, we never stopped just to soak it all up....one positive thing that has emerged from having RA...we have slowed down and take time to appreciate the world around us, and it is an amazing place.
Thank you for your reply, Happy5. It’s great to know that life continues post RA diagnosis and that holidays can still be a part of the “new” life. I am still mourning my old life … I have found that it is difficult not to rest, which makes me feel old, but fatigue is off the scale at times. I hope for better times ahead and have really appreciated this forum and how supportive you all are.
Thank you, I will try my best to have a good ‘um. Take care.
Hi. I got an annual multi-trip Europe & Mediterranean Coast (North Africa & Turkey) one from All Clear. It was about £100.
My top tip would be to stay in bed for the whole of the first day, pre-order breakfast for every day, and to go on trip adviser etc to read about any accessibility issues etc.
I pay extra now for being ‘near’ things. A city centre/ beachfront/ public transport infrastructure. Just make it as easy as possible for yourself, so you’re not wasting any extra energy on the basics.
One day on one day off works for me if I do any walking. Enjoy!
The best thing my Rheumatologist ever said to me at the start was this was the worst it was ever going to be. This helped enormously as I couldn’t walk, wash, dress or even sit up.
The drugs can take a year or two to kick in. Day at a time. Don’t beat yourself up. Say ‘no’. Be assertive. This is a marathon not a sprint.
Thank you for your amazing reply, CripLady. I really appreciate your helpful practical advice and guidance. At the end of the day, when the lights go out and the mind wanders, RA is a very lonely place to explore. It will take me a long time to fully come to terms with the diagnosis and accept it as a lifelong condition. I wish my Rheumatologist had said the same to me but it was a rather brusque consultation, which left me wondering what was ahead. Take care.
I've had RA 25 years and never stopped travelling. I've always used normal travel insurance, just always declared my RA. I've had some amazing travels, climbed top of the Vatican dome and Tower of Pisa, been across the Sahara desert and up the Atlas mountains. Just make sure you used good sun protection whilst away. Once meds are right the only thing stopping us living is us so grab life as it comes. I was a working single mum,aged 28, when diagnosed and I've never allowed it to stop me doing anything. Enjoy your holiday and don't let it beat you. X
Thank you, Nyereedw. You are an inspiration and your positivity is a great comfort. Although the diagnosis of RA has floored me I am trying to assume a positive mental attitude. The quest to find the right combination of meds is at the moment quite daunting but I am encouraged by you all that this goal will be achieved even if it takes a long time. I will definitely pack lots of high SPF sunscreen. Enjoy your travels and take care.
It took mtx, sulphasalazine and plaquenil together to work for me but this is quite normal. I'm also grateful social media wasn't around at the start. Just remember people who tend to post are the very small percentage who struggle, there are millions of us living perfectly normal lives. Meds are amazing now. X
Hi DmardingYes, it I frightening thing when the body you thought you knew starts behaving in a way you don't understand.
The only piece of advice I would offer is be very careful about sitting in the sun while you're on holiday. I went to Florida at a time when I was prescribed hydroxachloraquine. I sat in the sun for 10 minutes ,with sunscreen ,but my legs got horribly burnt. So please keep yourself covered up ! Apart from that, enjoy your holiday!
Thank you for your reply, Beastpig1 (that would be a good alternative name for RA). Yes, it is a frightening thought that your body is attacking itself and you have no mental control over it and the only recourse is to take a cocktail of drugs, with all their associated complications. I will definitely pack plenty of sunscreen and keep covered up. Take care.
Hi! I am sorry for your recent diagnoses of RA. I have been living with this disease for the past 33 years and have traveled quite a bit.....though not internationally. For any trip I make sure I have my meds with me....plus I bring my emergency prescription of Prednisone. I also bring some Naproxen Sodium that my Doctor suggested and some roll on Icy Hot. I make sure I wear shoes that are sturdy, supportive and anti-slip. I am careful not to eat too many of the foods that might cause a flare up. I have learned that sometimes I am going to struggle and make the best of it.....and other times I have no issues at all. I love adventure and live my life to the fullest that I can, but when my body says that is enough....I rest. I have learned to make sure I take rests when I need. I may not be sleepy, but my body can use a couple 30 minute shutdowns each day. Listen to your body, and don't push yourself too hard. Also avail yourself of services that are provided while traveling. Such as a wheelchair at the airport even if you think you do not need it, special parking, someone to carry your bags, use the accessible restroom. And make sure that your caregiver rests when you do. For insurance.....check with your specific carrier and let them know where you traveling to and their advice. If you need to purchase travel insurance....make sure it covers medical. Relax and enjoy yourself most of all. And bring a strong sunscreen lotion.
So lovely. Thank you for your wise counsel, NVMartha. Your advice is very much appreciated and I will try to ensure I cover all points. I am getting a strong message to pack plenty of high SPF sunscreen as a must. I am learning to listen to my body and try not to overdo things, even if I could. Take care.
Thank you for taking the time to reply, runningbracken. I am learning that you have to take each day as it comes with RA and hope it will be a good one. This does make planning ahead very complicated. I hope that your new medication helps together with the steroid injection and you make it across to your villa. Good luck!
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Newly diagnosed with RA - hopeful and happy!
Newly diagnosed with RA
Newly Diagnosed with RA
Newly Diagnosed RA
Newly diagnosed with RA - very scared and confused
