SusanP

Diagnosed with inflammatory RA in Nov 2011. Pain levels are high, major flareups that have swelling and flushing pain to the affected joints. At moment shoulder and neck pain that prevent sleep. Sulpa...Painkillers ...inflammatory tabs....steriod needed to help me last week...been for bloods today and liver levels are high....Specialist is considering Metho. so sent me for a chest xray.....will I ever be right again....up to 6 months ago I was a happy, healthy 55 year old that loved babysitting her 1 yr old grandson and working for a charity 3 days a week...now off sick and cannot pick up my grandson or walk with his pram 200 yards to the duck pond.... is there light at the end of this tunnel?......

33 Replies

oldestnewest
  • There is light at the end of the tunnel. I have been where you are. It is just a matter of finding the correct combination of dmards etc and they will get the RA under control.

    The most important thing is that you take the time now, to adjust your life to cope with the additional emotional and physical changes you are going thru. You must pace your life and try to stay focused and positive. Try to get to see a rheumatologist. That you can have faith in, and follow the advise they give you as much as you can.

    Your life may have changed, and you want your old life back. Maybe, you will just have a different life, but still good. Plenty of good blogs on here, and motivational stuff, lots of moans too. So nice you have a lovely healthy grandson, that's lucky. You will be able. To hold him again.

    Remember like everything This too will pass.

    Hope I don't sound too preachy, but you sound so lacking in hope. You are just down because it s early days for you.

    Keep in touch, great support on this site.

    Best wishes, Gina.

  • Aaah....|GIna just the kick i need...to know people are out there that have been same as me and are better now is the strenght to keep motivated and look towards better days...this condition is awful, never again will i dismiss someone who says arth is bothering them....cause no one can see the discomfort or now how tired you feel they dont understand how difficult life is......i feel like i am in a cocoon waiting to get out again. Looking out of the window at the sun and my garden.....i used to spend hours in it doing flower beds and pots and really enjoyed myself...hope this will be the way i can be again...even if it is slower than before....I am house proud and have had to rely on others to keep on top of basis tasks and even help me bath, wash my hair and get dressed....a shock when 6 months ago a started with bad knees....I trust my specialist consultant and the specialist nurse is very attentive and caring.....I am optomistic they will get me sorted but worry about the drugs and how my body will cope....

    Su

  • There is light at the end of the tunnel. I have been where you are. It is just a matter of finding the correct combination of dmards etc and they will get the RA under control.

    The most important thing is that you take the time now, to adjust your life to cope with the additional emotional and physical changes you are going thru. You must pace your life and try to stay focused and positive. Try to get to see a rheumatologist. That you can have faith in, and follow the advise they give you as much as you can.

    Your life may have changed, and you want your old life back. Maybe, you will just have a different life, but still good. Plenty of good blogs on here, and motivational stuff, lots of moans too. So nice you have a lovely healthy grandson, that's lucky. You will be able. To hold him again.

    Remember like everything This too will pass.

    Hope I don't sound too preachy, but you sound so lacking in hope. You are just down because it s early days for you.

    Keep in touch, great support on this site.

    Best wishes, Gina.

  • Aw, Susan, Just as Gina has said, so eloquently, We have all been where you are, but it won't last, that light is getting closer!

    At this point in your treatment, it is important that you report any ill-effects you might get from your meds, though, many things like nausea, or dizziness, usually go away as your body adapts to the meds.

    It is also important to give the meds time to do what they need to.

    Methotrexate is an excellent first-line of defense against this disease. If you have not started on it yet, I suggest you ask for the injectable MTX, as everyone reports nausea and feeling sick taking the oral ones. Plus, Rheumatologists generally believe you get more results with the injectable. It is one you do yourself, very easy, though he may have the nurse show you how for a time or two.

    Keep in mind, the goal is to get back to doing all the things that are important to you. If that means taking pain meds, by all means do take them.

    I was also 55 when I was first diagnosed. I had had two spine surgeries at that time, and my sons were getting married and producing my grandchildren. I could hold the littlest ones if someone handed them to me, but I could not bend to pick them up. So I was not allowed to babysit with 2 of my 4 grandaughters. Then the grandsons arrived, and the same thing happened.

    But, I got better, and babysat alot, as they all grew up. We had lots of overnight and weekend stays at grandma's, and as they got older, we had popcorn and movie nights. Then we had them staying for a whole week at a time, while their mom had another baby, this time a boy. The memories of those times will never leave me, and it is now fun to hear them talk about the times they were at Grandma's house. Now the oldest is 21, and the youngest is 13., there are 7 of them.

    Well get me talking about my grandchildren and your eyes will get blurry!

    Point is, it will get better, just try to do whatever your doc wants you to do, follow advice from your Physio if you have one.

    Most of all, stay in touch. We will get you through, good or bad days, with humour, sillyness, and lots of compassion and understanding and encouragement and advice :) This is a wonderful group, mostly women just your age, some younger, and a few men, who seem to get a kick out of all our conversations, while they say so few words :)

    All the very best for you, These are the cards we were dealt, now we have to play the game. No folding. Loret xxx

  • Hi Loret.....

    your story has encouraged me to remain focused and take each day as it comes...I am sure they will get on top of this but some days and when refecting on how life was i get sad that it seems they have gone for good....I am off work and think this in some ways does not help me. I am used to busy busy busy and being sat and just pottering and weak in arms with pain and tiredness is sooo frustrating...I find it hard to do the simpliest tasks.....but I am going to fight this and work towards being better ....... so i too can motivate some poor soul who ends up with this rubbish hidden condition that attacks the body so badly..... regards

  • Hi Susan Just as Gina and Loret have said, you have to stay focused, you must not let it beat you. Believe me, I have had RA for nearly 40 years now and been through several operations and a whole host of meds and I am now on Anti-TNF every 6 weeks which is wonderful. I can do most things although I have to think before I do them as to whether it will have any repercussions. This is the problem with RA that you have to adjust your life style to suit how you feel. I will not pretend that I do not have bad days because I do, but you learn to cope with them and the pain threshold does go up. Your body adjusts to the barrier and you can then cope with the situation providing you don't take it beyond the limit. As the others have said, you have to get to see a Rhumy Specialist as they know what is best and will steer you in the right direction and most are extremely helpful and cooperative. There are some lovely people on this website and you will be able to share your problems with them on a day to day basis and perhaps be able to get answers to your low times. Keep your pecker-up, it will get better! Brian

  • Tahnks very much for taking the time to write to me. It is much appreciated. What is anti tnf....why only every 6 weeks and how does that work.....?

  • Hi Susan So I understand, it is only after you have been through the process of the other main drugs for RA that they will consider you for Anti-TNF treatment because it is so costly. I have been on it for about 6 years now and it is wonderful! It has to be taken in conjunction with Methotrexate and then only if no other method is giving you the relief. It stands for Tumor Necrosis Factor (TNF) and attacks this excessive protein that is present in the blood and the main cause of inflammation and joint destruction of RA sufferers by reducing the production of it. The drug is called Infliximab and has to be administered by a drip at the hospital clinic and have regular blood tests and check-ups by the RA specialists. It will only be given as a relief if you are not responding to the other drugs available and will start off at intervals of every 8 weeks because of its toxicity and time it takes to take effect. They were finding that when I was on 8 weeks duration I would get to about 6 weeks and the effect was wearing off. So far every 6 weeks seems to be suiting me now. I still have flare-ups where I have severe pain somewhere for days at a time, but I have learnt to live with it now. Do not worry Susan you may respond to the other drugs available and will not need Anti-TNF, but always remember that this is available should you need it. I wish you the very best and I hope that I haven't worried you in anyway, please don't, as I am sure that you will be sorted out like the rest of us. Brian

  • Dear Brian, You have a marvelous education and outlook regarding RA! You could be a dynamic, compassionate, motivational speaker :)

    I am a firm proponent of education being the tool to recovery. The more we know and understand, the more we can contribute to how well we respond to the drugs used.

    I was once on Remicade for about 2 years or so, unfortunatly developed sepsis (blood infection) from an unknown insect bite on the back of my neck, the belief from my Rheumy being that I had very low immune system. Tru, at the time my WBC was only 3.2.

    So for years after, he did not want me to take any other ant-tnf. Well, things progressively got worse, have had 8 spine surgeries, two knee repalcements, 3 hand surgeries, and likey headed for a wrist fusion soon. Have appt with a Hand surgeon on the 10th.

    So, as things got worse, I began pushing for another anti-tnf, one of the injectables. I've had Enbrel, Humira and now Simponi. Simponi is doing the trick!

    In my quest to know what all I could look forward to, I realized most people don't have a clue. So, in talking to my local Pharmacist one day, he told me how many MTX patients there wer in town, and we decided it would be a good idea to see if they would be interested in getting together and talk to others with the same problems. I called the Arthritis Foundation Office, they got excited, sent me a case of brochures on all the different rheumatoid diseases, and I put a notice in the newspaper asking for interested people to contact me. Well, that was in November, 1996. We're still going strong. We have a co-sponsor, our local hospital, they supply the meeting room and a cart of beverages.

    Each month I have a speaker from one of the many professions that deal with these cases, and so, we have all learned a tremendous lot. Far more than our doctors could possibly ever teach us in 15 mins. That has given me so much gratitude and satisfaction, because when I had to go on disability in 1994, it tore me apart, I was only 50something, I was totally defeated, had no sense of purpose, had no idea how I was going to spend the rest of my life, doing what?/ That Pharmacist gave me just the incentive I needed.

    I do have a medical background, I was a Medical Laboratory Technologist, specializing in Microbiology. I may at times here, start teaching, and always think somebody is going to ask "who the devil is she"?

    I'm just passing on to others what I have learned, from whence I came :)

    There is one major issue I wish I could see changed over on your side of the Atlantic, and that is the process that causes so many to suffer so badly, for so long, before they get approved for anti-tnfs. It is done here also, by our own Rheumatologist, they have guidelines to follow too, but when the patient gets to that point of being in need, he orders the drug, the patient consults his or her insurance and financial arrangements can be made. Unfortunately, there are still too many people un insured who need meds they can't afford.

    The Arthritis Foundation regularly goes to Washington, DC, to appeal to our Senators and Representatives to ask them to appeal to the Pharmaceutical companies to get those prices down on life saving drugs. It is obscene when they announce the amount of profit they report for a quarter of the year!

    The only comfort I get, is they do have to spend enornous amounts on research, to pay the highest skilled minds in the business to come up with new, better, faster acting, hopefully less expensive remedies.

    Hope I haven't tired your eyes! I get to rambling on more late at night when I don't have other committments hanging over my head. Thanks for reading, it was a delight to read your post. Hang around :) Loret xxx

  • Thank Loret, I was very kind of you to make that comment about me and I thank you very much. It was also very interesting to read about your experiences in the States and I guess that because Anti-TNF treatment was first developed in the USA you probably know more about it that I do. Keep in touch! Brian

  • Thanks very much...the more information I have the better I think....the specialist appointments are quick and so good knowledge for any questions is the best to make the most of the time.

    Another bad night last night...my shoulders and neck/upper arms are painful and i cannot get a comfy postition is bed...moving during the night is very stressful and tiredness on top of pain is rotten.

    I am grateful for your clear information....deep well regards Su

  • Hi Susan,

    Like others have said, this is the very worst of times. It's difficult enough getting the diagnosis and then you have to wait for anything to take effect - and if you only started Sulpha in November it may well not be working yet. But hang on in there, it will get better. And keep talking to your docs/nurses and pushing for the best treatment. MTX is a scarey drug but it does work, so if the sulpha doesn't do enough then don't be afraid to add others (I'm on MTX, Sulpha & hydroxy - lots of pills, but the pain is ok and can play with the grandchildren). Polly

  • What is scarey about the MTX?

  • It's a strong drug - used in higher doses than we take for chemotherapy for people with types of cancer. And if you read the patient leaflet it has lots of rather scarey sounding side effects. But these are rare, and you will be very well monitored with regular blood tests.

    And yes it takes ages, and the tiredness is awful - but that gets better too! P

  • Thanks for the info...I will make sure i ask all the right questions about the drug...at the moment i would take anything if it helped with the mobility.....

  • Oh Polly.....u give me encouragement that it will get better....i will keep in touch...good health to you and painfree days

    regards Su

  • Thanks for your support -all of you.....what is anti TNF?....i am taking sulph...antin flammatory and lapriz...with painkillers and like I said have had two lots of steriod as I was really struggling. I do blieve it will get better and time will help the meds work but does n't it take a long time!...my specialist is waiting for chest xray results to consider metz and i will ask for injections as i have heard that tablet form can make u sick....my crp reading was sky high this week and getting my head around all the different types of treatments is difficult but , knowing you all say to "hang in there". is helping. I am sooo tired most of the time and movement from the arms up is painful....it started in my knees and ankles but upper body is worse i think as it it even more disabling. I have been off work now for 5 weeks and have not driven the car or picked up my grandson...miss doing things and its the little things i took for granted that are so depressing.

    I need to go to do as well as the pain day to day (even without a flare up) doctors in the next week and see what he thinks about work...anyone else been off and wondered what will happen? I worked 3 days for a charity that looks after Carers (think my husband and daugher are these for me now)...please keep up the chats the information and support are needed here.....Susan

  • HI Susan

    Like you I started on Sulph just a few months a go as well as being on hydroxy,, meloxicam, amytriptiline & co codamol.

    The sulph did start to work but I had a virus which made me feel worse, so had a steroid injection.

    It is tough when you've been so active & now just don't have the energy or the ability to do them!

    I'm trying to learn to pace myself - not always easy! Ilook after my grandchildren I day a week & that wears me out but I love doing it!

    I have two dogs aswell which means I have to get out & walk most days. I don't always have the energy but I do think it is keeping me fit!

    It's the constant tiredness I hate!

    Hang on it there!

  • I am tired and wonder if resting works or if doing stuff works!....suppose it is a balance of both....u go out walking the dogs....i dont anymore ,, jsut let him play in the garden, fortunatley it is big but with your inspiration maybe a will in not to distant future and maybe i will be able to look after my grandson again( i used to 2 days a week whilst my daughter worked) My husband has gone back to work today after being off for just over 2 weeks and i am pottering around the bungalow doing bits and pieces. I have managed to put the washer on..turning the dial is fun..NOT..and even made myself a brew cause he left the tea, sugar on the worktop for me. Each day i hope it will be better and i am doing my best to stay positive...it is soooo hard when it is frustrating not being able to do the simpliest of tasks without grimacing with the pain....I used to decorate and having just finished some changes to the house a couple of walls have been plastered and need papering...bummer ! need to look for a decorator and then wait for him to be free to do it...new carpets bought but cant get them laid till the decorating is done and them at least my home can be put back together. The sun is shining at least although it is cold and maybe after the week end i will have improved a little and the meds will be working better ...her is hoping .....Su

  • Yes there is

    I was diagnosed 4 years ago having had joint pain for some 6 years. I am on 20mg of MTX a week and have now been started on cimzia injections. I try to take each day as it comes. I have good days and bad days. At the moment I am on the side of bad.

    My husband was diagnosed with MS 4 weeks ago ans I say also why me. I am 42 ans I used to think life is not fair

    It does get better not the pain and the swelling that just needs to be controlled. Talk shout swear if it helps but most of all just take things a say at a time

    Feel free to moan - we all feel that it from time to time but it does help to laugh and moan

    Take care and keep blogging

    Hugs and and kisses

  • I was only diagnosed same time as you were Susan but had been put on Sulpha in April by my GP and then had a bad allergic response to it. Now I'm on MTX and it does seem to be making me better although that may be the self help trip I'm on too with lots of physio and exercise because it's only been in my hands and wrists since diagnosis and before that steroids kicked it off my shoulders, knees and ankles for a while. So compared to last year I'm relatively well and fine on MTX so please keep your chin up as you are probably in the worst stages where I was back in October where I could only shuffle about. Others have said it far better than I but am off to watch Borgen!

    Take care TTxxx

  • Hi Su, just read your blog. I got RA 11 March.............. 2011! .....At 7.15am!!

    which is when I woke up with it and felt very similar to what you describe. I think I went from running around at work and seeing to the family, then going to Rock festivals and camping at weekends, to similar to you not being able to walk or use my hands and thought " you what!!" I also didn't realise what was happening and got more of a shock as I have a family history of RA but was told I didn't have the RA in my blood, so thought i was immune to it.

    I think it is hard and I lost a bit of who I am in a way. However with the help of the Rheumatology department and my work colleagues I realised this is an illness and anyone can get ill. I also learned the value of what everyone has said to you about "pacing". I would do ten things in a day and at the moment I do one before I get tired and sore. BUT if I do this one thing it makes me feel better in myself and I rest after it.

    Talk a lot and if you can I would suggest talking to someone outside the family ,as well as your friends and family, like the people on this blog cos they are lovely and actually DO understand. I found the NRAS helpline invaluable answering and listening to my worries....for hours on end!!

    Do use your painkillers and if they dont work ask for other ones cos it's difficult to think of anything else when u are in pain. From my experience many people find Methotrexate helps them but the one thing for me, has been to learn to have patience. They will try one drug for 12 weeks and if it doesnt help they will try another, so that makes me feel there is light at the end of the tunnel, but it takes a bit of time.

    We do have a long term disease but there are specialist there for us..which is good. Take a list with you cos you might think of things before your appointment and forget to ask when you are there.

    And forget doing ttoo much to the house for a bit, get others to do it!!! You can catch up maybe when u feel better!!! You notice more marks and stains when u sat at home than ur visitors do, I think lol .

    Please keep looking at the site, last week Sylvie was asking who's body we would change to which gave me a laugh and Sci queen got back to work!!! Good luck on your next appointment and hope u start your MTX (Methotrexate) very soon.

    love Axx..

    will be thinking of you.

  • Thanks soooo much.....i now have things to talk about and help my husband understand what is going on with my body....we can get to grips with options and paths the condition may take, meds and understanding the pain and how it can be controlled....having people in the same boat is helping....I will keep going on this site and blogg each day......Love su

  • Tildat...thanks for your information and experiences......i am worried about Metx...but will give anything a go to get relief.....i am taking paracet and codeine to helop during the day.....anyone any tips on getting a decent nights sleep?

    Is it worth me trying to get physio yet...?

    Will i every get back to work?

    What a lot of questions are in my head....too much time to think at the moment and only used to dashing here and there...day time tv is rubbish!

    Hope u keep well and active so great to see so many people wanting to help me....THANK YOU FOR ALL YOUR SUPPORT, INFORMATION AND ADVICE....

    regards Su

  • A lot of people do very well on methotrexate so try not to be scared x

  • Thanks....your support is welcome......

  • Hubby given me a bath, helped with pjs ...now bit of tv and them back to the concrete bed....maybe tonight will be different one never knows......

    Hope all my blog friends have a good evening and peaceful nights sleep.... Su

  • Ummm, maybe a soft mattress topper, or new mattress might help ?

  • I know what you mean about the bed feeling like concrete!! II just got a new soft mattress topper for my shoulders and a new memory pillow, it helps a little. Hope you sleep well

    Axx

  • We have memory foam mattress but no pillows so will try to get them too....bad night, half asleep and duvet feels heavy too...up and brew early then tv and them back to bed...got a couple of hours so that was a relief but very stiff and hurting so having paracet every 4 hours today and trying to leave the codine and do nothing all day. Trying not to think about the condition too much as feel like crying today....

  • Had a day sat in the chair in Pjs.....looking out of the window and trying to remain positive. Some people on the blog have recommended supplements along side the medication and i think i will discuss this with my gp this week. No sign of arms getting better yet...so painful to reach for things and hold a drink.

    I am not being beaten and will keep going on the support offered by other sufferers....

  • It's good to do as much as you can to help yourself, so eating well, supplements and so are worth looking into to have alongside the meds. Each of us is different and they help some & not others, so could well help you. But most of all do keep believing it will get better, as it will. With lots of diseases we're used to things working quickly. Unfortunately with RA you have to be prepared for it to take a while. So do keep talking to GP and trying out what works best for you, and rest if you can. It's tough, but hang on in there. Px

  • Thanks....trying my best but sooo frustrated with myself....off to see Gp this week and bloods next thursday so will ask about complementary meds......

    off to try and make a brew...lol xx

You may also like...